I'm Doin It Everyone!)

Well soon after we put up the last update they went ahead and decided that he was ready. At 8:37 pm last nigh Lincoln too his own breaths since minute two of being born! Last night was filled with anxiety since it was new to him and sometimes the effort in figuring it out can tire them to the point of not wanting to breath anymore. But he did awesome! It took some gasping for a while...but he settled right down and was doin it...we could finally hear his little voice crackle as he cried. They are moving Lincoln back down to the NICU for the remainder of his care. There are a few BIG prayer requests to pray for! 1 - Lincoln's oxygen level in his blood is too high (around 92-94%). This means that he is getting to much blood flow to the lungs. Over a short time this could cause him to build fluid in his lungs...the condition is called Pulmonary Adema. This is bad! The reason this is happening is that the pulmonary band probably isn't tight enough. They are going to give him a few different medications to help with the issue but it won't correct it. The Dr's said that as he gets bigger his vessels get bigger and the band stays the same causing better restriction. This would be great, but how long can we really wait? The high pressures could also go down as he adjusts to breathing and things kinda balance out. For now, we pray that they just go down (we want them to be between 75-85%)! 2 - The drainage from his chest tubes as a result of his Chylothorax has increased a bit. They will now give him a medication to help heal the damaged thoracic duct. Pray that the healing goes fast and that his chest tube can come out ASAP. We also want him to begin feeding him again soon...lack of ingested food keeps his gut from being stimulated. That is very hard on his liver and can damage it. So pray that the Chylothorax heals quickly! Well for now, other than those two issues, Lincoln is doing great. Continue to lift him before the Father. Pray that his little life is a testament to everyone there of God's Greatness & Love. Talk to you all soon...we love you! J&K

Getting Stronger

We woke up throughout the night calling the CTU wondering how Lincoln was doing. Every time we called they were lowering the vent settings and he was tolerating it! When we got to the hospital this morning Lincoln was on "pressure support." Basically this means that they weaned the ventilator down to the point that it was no longer giving him a breathing rate...he was initiating every breath! The vent is now just supporting him by giving him a little boost in each breath. The Dr's gave the analogy of blowing up a balloon...the first breath to get the balloon started is tough, but once it's started you can blow up the rest much easier. In essence, after Lincoln initiates the breath, the vent helps him by giving that little boost and then he finishes the rest of the breath. Today they have been giving him pressure support for a few hours and then letting him rest a bit. They will repeat this process throughout the day and into the night getting him stronger. Tomorrow they will see if he can do the whole thing on his own and decide to extubate if he is ready. The last 24 hrs have been awesome to see how he has been handling their aggressive weaning, considering the vent was helping him at a rate of 30 breaths per min and 24 hrs later, he is doing it...he has been doing great! Now a few prayer requests: His breathing rate is very fast now that he is on his own. They are not sure if that is due to pain, having to breath through a small tube, medication or maybe because of high pulmonary pressure due to the band not being tight enough. Pray that it is the prior and that the band is sufficient. Pray that his breathing slows to a more normal rate. Continue to pray for the Chylothorax to heal and dry up as it has been draining still. Pray for no infections due to the chest tubes being in him for at least 2 more weeks. Pray for stronger lungs. Always pray for better cardiac function and blood pressure. We can't wait to tell you what the next 24 hr's has in store...we will talk to you soon! J&K

Prayer for Huge Step!

This will be a quick update....When we got to the hospital this morning we noticed the ventilator settings were turned down from the night before. The Dr's told us that they want to take an aggressive advancement toward getting Lincoln extubated. Over the next 24 hrs they are going to be weaning the ventilator settings to the point that he will be doing all the work. Their goal is to bring the rate and pressure down to where he is breathing on his own by tomorrow. This is HUGE! Please pray that this is not too quick of a step and that he can tolerate it. Pray that his heart and lung pressures adjust POSITIVELY. Pray that his lung muscles have enough strength and do not tire out too quickly. If they don't adjust positively or if he cannot tolerate it they might have to entertain the idea of adjusting the band on his heart. We will let you know how things are going as soon as possible! J&K

Ups & downs

Wow, how time flies! Lincoln is already 2 weeks old today! Well, It's been very busy around Lincoln's bed the last two days! Unfortunately when you are in intensive care you have to prepare yourself for a few backwards steps. Lincoln became sick on the 24th due to a metabolic alkalinity. This happened because in the process of urinating so much water you loose a lot of your bodies natural chemicals that make everything balanced, nice and happy. This made Lincoln not feel so hot and the doctors had to play catch up to get his body balanced out again before the can go forward. Yesterday was a good day for catch up. As they gave him the appropriate medications he was feeling better. They were even able to start feeding him Kristen's milk trough an NG tube (nasogastric). So, here we were thinking that yesterday was going to turn out worry free....nope! In the afternoon I started noticing a creamy colored fluid coming out of Lincoln's chest tubes which isn't normal. This was evidence of a condition called chylothorax (link - www.emedicine.com/med/topic381.htm). When you metabolize food, your body sends triglycerides (fatty acids) to your lymphatic system by way of a thoracic duct. Sometimes during thoracic surgery that duct becomes torn or damaged and leaks the fluid into the thoracic cavity. This is why we were seeing it coming out of his chest tubes. It isn't too serious but it changes his care management a lot. Lincoln has to be put on a low fat diet (which means no more milk for now) and be given a new medication to help the healing. Instead he will be on a high calorie pedialyte regiment. This should slow down the leakage and hopefully stop it. They will test it in a few weeks by giving him milk again. On rare occasion they have to correct it by surgery. The bummer of all of this is that this is a slow process. He will need to have his chest tubes in for the entire testing time which is not only painful but a good breeding ground for infection. This shouldn't however slow any other healing. It should not affect his heart or lungs or weaning off of other medications, although it might slow the process of weaning off of the vetilator. Other than that, Lincoln is doing well! He likes to open his eyes and look around a lot. He even showed a little interest in watching the NASCAR race yesterday (that's my boy!).



Aaron & Ginger Cook came by for a visit on Sunday to hang out with Lincoln and brought some reading material for Kristen to pass the time. Nana, auntie Heather & cousin Sydney also came to see the little dude. Heather had to leave the hospital one hour before Lincoln was born...so it was a real treat to see him after a two weeks of waiting. Nana even got an early birthday gift as Lincoln opened his eyes for her.



Please be in prayer for: The chylothorax stops leaking; The Dr's can keep his body's chemicals in balance; Lincoln's lungs get stronger so he can be weaned off of the ventilator; NO INFECTIONS!; Continued prayer that the pulmonary band and the coarchtaion repair gets better. Thankyou you all for your prayers and support...we love you all! J&K

Hey there everyone! Sorry for no update in the last 24 hours...but no news is good news I guess. Lincoln is doing good. There hasn't been much change in the last day and a half. Lincoln is finally shedding off a lot of water. He is on two diuretics and is starting to look more like his birth weight. One of his 3 chest tubes is draining a lot more fluid which is baffling the doctors considering it was almost dry. The plan is to let him keep getting fluid off of him and after that start weaning the ventilator. Lincoln is doing great during the times he is fussy. His vitals are stable when he cries. He also like to kick & push your hands away when he has had enough. Now, if we could only get him to stop pulling on his ET tube (ventilator tube)!...becuase of which he has now adopted the nick name Linker Stinker! Please pray that the chest tube stops leaking (only if that is a bad thing which we don't know at this point); His urine output stays great; and that we see forward progress with his heart and lungs! Pray also for us as we are sooooo drained physically and emotionally! Pray for medical finance and that Lincoln's CCS insurance goes through quickly! We love you all....talk to you soon! J&K

Well, Lincoln had another great day yesterday as you can probably tell by the pics! They were able to get him completely off of another heart medication called Dopamine and off 1 of his 3 pain medications. He still has a ways to go, it's a sloooooow process. They do not want to rush anything! Now that he is feeling better he is actually being a little feisty with his nurses. He is letting them know that he doesn't like to be touched so much now that he is more alert. He actually kept his eyes open for about 30 min as Kristen and I laughed and played with him. We think he has blue eyes! The plan for today still remains the same...keep comfortable, keep peeing!, and slowly wean medication and ventilator setting. Thank you all for your steadfast prayers and support...we love you all! J&K

Hey everyone! Sorry we missed a day! Lincoln is doing well...he actually has had a pretty decent 48 hours. Yesterday we hit 3 huge milestones! 1 - The Dr's had done another echocardiogram on him and found that his cardiac function and pressures have improved so they are saying "hold off on going back in to make any adjustments for now." 2 - He was able to be weaned off one of his heart medication called Epinephrine all the way. 3 - His vitals and his urine output have been great! If he keeps making these steps forward he should be transferred out of the CTU back down to the NICU before to long...so that is the prayer! Keep moving forward! Pray that as they try to wean off his other meds and make adjustments on the ventilator, Lincoln responds positively and becomes more stable. Keep praying that his little heart band is tight enough and the coarchtation stays open wide. Ben & Rachel Dhillon surprised us with a visit and of course the crazy youth pastor had to be funny in the picture. Kristen and I got to bathe Lincoln last night before we left the hospital. Kristen got a picture of me in the action. If you look at his face, a lot of his swelling has gone down due to him loosing the fluid by peeing...see, God answers prayer! So the plan for today remains the same...keep him comfortable, wean medication, watch and pray! We love you all and talk to you soon!

Hey there! Yesterday was a hard day...a lot of ups and downs (which is to be expected). Lincoln peed (like he was told to from his daddy)...but toooo much! His Blood pressure bottomed out because he might of became dehydrated. Yes, it is a balancing act with everything especially when he has 15 different pumps pumping different medications to do different things all at the same time and adjusting them as he changes. Lincoln finally stabled out last night only to get a low grade fever (which is also common after surgery). They are drawing labs today to determine if it might be because of an infection. Today the plan is to keep him comfortable,

peeing, keep his fever down and his vitals stable until the Dr's can discuss his case today and make a decision on what to do next. Please pray that Lincoln makes us all surprised and takes baby steps forward. We know that God is more than able! Also, please pray for physical and emotional stamina as Kristen and I hit a hard spot yesterday...We know that the joy of the Lord is our strength...so we ask for that today...JOY! Lincoln got some visitors this last week and yesterday. Eric & Jill Doswald came for the delivery and were a huge encouragement. Dave & Michelle Aaron came too and brought a adorable outfit for Lincoln to wear as soon as he is able. Rick & Lana Jackson came from Oakhurst and brought a little bear stuffed animal to put in his bed to keep him company. Not to leave out...grandparents, auntie Heather & cousin Sydney, auntie Tina and uncle Sam & aunt Michelle. Kristen was able to pick Lincoln up and hold him while the nurse changed his bedding...that was a treat! And when we went to pray with him before we left for the night Lincoln opened his eyes for us to see for the first time. They stayed open for about 15 seconds before he got tuckered out and fell back asleep. He lets us know he hears us by moving his hands and feet when his mommy and daddy talk to him. Thank you everyone for your continued prayer, support and encouragement! We couldn't do this without you! Talk to you soon!

Baby Steps Forward!

Hey there! Its 10:20 AM on Sunday and we are anxious to see what today holds. Last night around midnight he was somewhat stable but hadn't peed. We woke up in the middle of the night a few times and checked in. His nurse said after changing some medications he actually peed ALOT! That's a great thing! They also weaned some of his heart medication because his blood pressure was getting better. Baby steps is the word today! We also talked to his cardiologists last night after they had done an echocardiogram on his heart. They wanted to check out how his heart is functioning after surgery and determine if the swelling, poor circulation and blood pressure are due to a problem in the heart still. They said that the "band" the surgeon put around the pulmonary artery might have loosened and might need to be tightened. They also said the "coarchtation" in the aortic arch (the one that they tried to fix) might still not be wide enough for adequate blood flow. This news is not the most welcomed as you can imagine...considering they might have to go back and fix these problems again. They don't know if what they saw on the echo is due to these new problems or due to the fact that he has a lot of water in his body making the pressures high. They want to wait a few days and see if Lincoln sheds some water and can come off of some of his heart medication. If he does that and he improves, they might not need to adjust the band and fix the coarchtation. So the next 24/48 hours are huge! Please be in prayer for this specificity! God is soooo good to us and we are waiting with great anticipation this Fathers Day for good news...and baby steps forward! We love you all! J&K

Recovery

So we actually went home and got some sleep last night. I felt guilty leaving last night because he was so unstable...but he did OK too. Even though the surgery went well, his body now needs to adjust to all of the changes of the heart and we are finding that it isn't so easy. The blood pressures in his body are still sort of week and his heart rate is very fast. They can control this with medication but they want to see him come off of the medication. The are watching some of his vital organs to see if the lack of good blood pressure and perfusion is keeping them working properly. One of these concerns is with his kidneys. Before surgery he was peeing really well...an indication that his kidneys were functioning well due to good blood flow. Since surgery he his urination has been very bad (only about 1 cc an hour). A lot of times this can happen when you are put on heart/lung bypass for surgery and takes a few days to start up again. The prayer is that his body adjusts well to the changes and that his little heart and vessels send blood all the way from his head to his toes and keep everything warm, pink, and functioning great....and that he PEES! So now we wait and see what will happen...only he now can tell us how to adjust to his needs and we pray there wont be need for any major procedures until he is stable. We love you all...We will send an update soon!