Matt & Kim Souder and the kiddos also came to visit and got to see the little dude.

Happy independence Day!

Yesterday was a great day for feeding. They decided instead of giving him low fat formula to see if the chylothorax is healed, they would first stimulate his gut by giving him some Pedialyte. This does not have any fat in it so it wouldn't leak from the lymphatic system. There is 3 reasons they did this: 1 - Simulate his gut and get it ready for food. 2 - Give him one more day of healing before introducing fat into the lyphatic system. 3 - they were thinking they would have to give his formula by NG (nasogasteric) tube through the nose down into the stomach....but maybe if he could drink the Pedialyte by bottle and swallow it he would be able to do the same with the formula and not have to have the NG tube. Well, when the nurses gave Kristen the bottle with a few cc's of Pedialyte...Lincoln took it into his mouth, sucked on the bottle and guzzled it down! No Prob! So that was a huge success for being 3 weeks old yesterday and never have had any thing to eat. So the plan today is to give him the formula and watch and wait to see if any thing comes out of his chest tubes. So pray for another big miracle today...no drainage! He also had a lot of family come to visit him so he was exhausted....these are some pics we took after everybody had left..."I'm tired now...I think I'll sleep".

BIg Feeding Trial Run...Pray!

Lincoln is doing good. Today they are going to attempt to feed him a little bit of formula. We watch and wait if any fluid leaks into his chest cavity during the digestion process. If it leaks, we will see drainage through his chest tubes and we will have to wait another week or two. If not, they will build up the feeding slowly and will be able to remove the chest tubes. Please pray today for a successful trail run! Here are a few pics we took yesterday...his nurse wanted to be a little patriotic and lay some red and blue blankets under him since he cannot wear any clothes. We will post a bunch more pics tonight! We will let you know how it goes asap! Love you all! J&K

Hey everybody....
Sorry for the no post today....It's been a very busy day. A lot of family came down for the weekend to visit so its hard to get to the computer. Also no pics today....sorry, I know that's the best part. Tomorrow I will post a bunch! Lincoln is doing good! We are still just waiting to see if this chylothorax will heal and he can begin his feeds. They have decided to wait only 5 days instead of 7-14 days to let the duct heal before they to a trial run with his feeds. Today was day 3 of the 5. So Monday they will stop the medication (Octreotide) used to help it heal and then begin with small amounts of a nonfat special formula through NG tube. If it has healed there shouldn't be any drainage from his chest tubes. If it hasn't healed, we stop feeds, wait another week, try again and the chest tubes stay in until the problem is fixed. Pray that the chylo is healed by Monday and he can tolerate getting food! The presence of the chest tubes are so painful and such a huge risk for infection...plus he needs the calories to put on a few pounds which will just help the all around nutrition aspect too. Today Lincoln's chest x-ray was a little cloudy. This means he is getting a little fluid on his lungs. This is caused by high pulmonary flow to his lungs. He seems to be handling it ok since his vital signs and chest sound are good. Pleas pray that his lungs become & remain clear! Other than those two things, Lincoln is doing great! Well, that's it until tomorrow...we will talk to you then. We love you all! J&K

I Love My Binki!

Yesterday Lincoln got his bandage taken off of his chest. Now you can see his "war wound" scar he will be proud to show as a boy. They even spiked his hair when he got his bath. His nurse did a trial run with a pacifier. Infants who often go into surgery right after they are born loose their "suck & swallow" technique because they are not eating right away and have to be taught again. Lincoln obviously knows what he is doing since he grabbed a hold of it and went to town! Well, the plan today is the same...keep him comfortable, stable, watch his heart, keep his lungs dry, no pain from his chest tubes, no infections, good blood gases, and WAIT for the chylothorax to heal. Please pray for those things and for us! Also pray for one specific bill as our insurance has threatened to not cover it. Thanks again for you faithfulness and love! We will talk to you soon. J&K

The Waiting Game

Well, things are going well. Lincoln is handling breathing pretty good. We finally get to see his whole face. Since he is not going to eat for two weeks they pulled out the NG tube out of his nose. Now that he is extubated we are told we can hold him although not quite yet. His breathing is still quite fast (60-85 breaths per min)...so when he gets excited or agitated the breathing rate goes even higher and his "saturations" (oxygen in the blood) goes down and his blood pressure goes up. So when those things get better we will be able to hold him. Oh...and by the way the oxygen level in his blood is now down to 75-85% and holding...praise God! They are not quite sure why he is breathing this fast. They are still speculating that the band might not be tight enough around his pulmonary artery. But as long as his blood gases, vital signs, saturations & no sounds of water on his lungs are o.k. then they are fine with his high rate of breathing. Lincoln's chest tube drainage has slowed down a lot. As long as they are not draining it means that the duct can now begin to heal and there should be no presence of extra water near his lungs for them to soak up. We just have to wait & wait & wait. This will be very hard considering Lincoln is trying to make forward progress, and having the threat of fluid near the lungs & infection because of his chest tubes only makes the waiting harder. Not to mention his tubes are so painful and now they want to start weaning his pain medication because of withdrawal. So continue to pray that the pulmonary band is sufficient, the chylothorax heals and he continues to make forward progress with out infection. Last night before we left the hospital, we saw Lincoln making the funniest face expressions while he was sleeping. He must have been having a good dream because we caught a picture of him smiling. Kristen and I are doing o.k. The hospital routine is so exhausting! We forget sometimes that there is a world out there happening around us but time seams to stand still when you never leave the hospital...plus there is only so much cafeteria food one can eat! But we are doing good. Continue to pray for our emotional, physical & spiritual strength as those tanks sometimes run low. Thank you for all your support and prayers. During the nurses shift change (from 7-8 pm), we go to the hospital library and read the blog. The messages are so encouraging to us! Cant wait for you all to see this little peanut you have been praying for. We love you all! J&K

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