Adjusting!

Well...you all are probably saying to yourself..."Man, I miss those pictures!" As you can imagine we have been very busy trying to get adjusted with Lincoln here at home. We will be updating more frequently...but for a short while it will be slow going. Lincoln had his first checkup with the cardiologist and the pediatrition at Children's Hospital on Tuesday. They both said Lincoln is doing good and if things go smoothly, we could wait as long as 6 months before the next surgery. Lincoln is still learning to eat better. We are still having to feed him whatever he does not finish through his NG tube. Please pray that he continues to build strength and stamina to take ALL of his food. This could be a sloooooow process! Lincoln is also experiencing some constipation due to the type of formula we have to give him...please pray for that also as it is giving him some pain and a little blood in his stool! When the Dr's were saying that "cardiac" babies tend to want to be held....they weren't kiddin! Lincoln does not like to be put down...whether in his swing, in his bed or just DOWN or else we hear about it! Lincoln has finally developed his scream and he is sure to use it if he is not being held. He is sleeping well at night, hates baths with a passion and loves being in his room. Well, we took Lincoln on his first outing other than to the doctors....Target!...ya, he likes Target. Well, I know you all want to know every little detail...but thats really it for now. We will be sure to update more often....keep the prayers going! We love you all! J&K

It's Good To Be Home!

Its good to be home...we think?? The weather of course it nastsy. If it isn't challenging enough bringing a child home with special needs...how about bringing one home to a broken down air conditioning unit. That's right...no air for 2 more days...but we are managing. Our jouney home was adventurous...Lincoln did great. Lincoln is doing good...adjusting to the heat. We have our first appointment with his cardiologist here at Children's Hospital tomorrow. It's their turn now to monitor Lincoln and determine when he needs his 2nd surgery. A huge thanks to all of you who have been praying and supporting us...we could not do this or continue to do this with out you....don't stop! A big thanks goes out to Ed & Jean Hayes for hosting us at their house...with out them we don't know what we would of done. A lot of you have asked if we are going to keep the blog going. The answer is yes! We will update two or three times a week or as often as we can get to it when we are not to busy taking care of Lincoln. The idea was to have this going as he grows so all of you at home tracking his journey can watch as he goes through all of his surgeries. We will update ASAP....we love you all! J&K

"I'm Going Home Everyone!"

Well...today Lincoln is 5 weeks old...and there is no better way to celebrate than a trip home! The Dr's told us that they are comfortable letting Lincoln go home with his NG tube. Babies tend to do better with feeding when they get home and they feel that he is nutritionally stable to go. So after a few tests today we will be heading home! Pray the transition goes smooth and the car ride too. It's kinda scary thinking about taking a baby who has critical needs home and not having the constant supervision of Dr's and nurses around to monitor things.....but its our turn now! We will be leaving this afternoon...so pray hard! We will update you all soon. We love you all! J&K

We Just Need To Eat!

Hello to all...Lincoln is doing wonderful. The cardiologists gave him the green light to go home in regards to his heart. We are now just waiting for the NICU Dr's to give us the ok. There is basically one thing keeping him in the hospital...eating. They have removed all of Lincolns tubes, wired and IV's and he is not hooked up to anything other that his heart monitor. He is almost a free bird. He is also getting all his medications orally. Lincoln is now at 52 cc's of Pregestimil. Unfortunately he is still eating about 1/2 to 3/4 of that amount before he gets pooped out. Every once in a while (maybe 3 out of 8 times a day) he will drink his whole bottle on his own. The Dr's what him to be able to drink his whole bottle every feeding. The reason for this is that Lincoln spends so much energy trying to eat that he can sometime burn to many calories and be nutritionally unstable. Thay want him to learn to drink it all while in the hospital so they can monitor his nutrition and build up his reserve and stamina so it is more safe to go home. Please pray that he gets stronger and drinks his whole bottle every time. The though of going home brings a lot of emotion to the surface...past and present. Pray for us as we adjust to the possibilities of going home soon and how that will affect us. Ben, Rachel, Laurel Dhillon came to visit this week and it was great to see them again. We will give you an update as soon as there are any changes. We love you all! J&K

So Far So Good!

Well...Steady as she goes. Lincoln is doing great! They finally took his final chest tube out and there hasn't been any accumulation of air or fluid...so far. Since he has had that chest tube out he is not experiencing as much pain as before....and you can tell he is more comfortable by the way he acts. Feeding is going great also. Lincoln is at full feeds (46 cc's). He has started to drink the whole bottle on his own now...well, when he feels like it or when mom is feeding him. He sometimes dozes off while eating still and does not finish. Cardiac babies get real tired while eating. They burn a lot of calories and eating is like running a marathon to them...so that is why he falls asleep. Speaking of calories...they are increasing the calories in the formula to get him stronger. He is now getting vitamins too. They stopped the Milrinone (heart medication) IV drip and switched over to an oral version! So, currently there are no more medications or any thing going through his IVs. They will keep them in though because they sometimes need to replace minerals he expels when he pees...like potassium and calcium. For now the plan is to monitor him and his heart as he grows and wait until he is stable enough to go home. Continue to pray for all of those requests we have been mentioning in the previous updates and the new ones today. Hey...Lincoln's buddy Wayne came to visit yesterday...I think Link liked his beard. Talk to you all soon...we love you all! J&K

I'm 1 Month Old!

Learning To Eat

Lincoln is doing better now that he is eating more....he is now almost a 6 pounder! While Lincoln is eating, he gets tired easily. He still does not finish what they give him and is having a little trouble with the "suck-swallow-breathe" thing. He is now getting 45 cc's but can only nipple about 25-35 cc's. Because of this, Lincoln is now working with an Occupational Therapist to teach him better technique while eating....and he is picking it up slowly. While drawing his daily labs yesterday, the Dr informed us that his "Bands" and "White Blood Count" were slightly elevated. This is an indication that Lincoln might have a "foreign invader" in his blood and might need to be put on an antibiotic. The preliminary culture test taken this morning turned out negative but they need to wait 3 days for the total confirmation. This is probably due to how many open wound sites he has from the chest tubes and the IV's. Pray that no infection grows in the next couple of days or we will have to put things on hold while he battles that! We talked to the cardiologist today...he said that Lincoln should be able to handle things (his high sats. and a little pulmonary edema) with his heart for now or at least until the next surgery. Today they will wean him completely off his final heart medication that is given by IV and switch over to the oral version of it. This is the final IV drip that Lincoln is attached to...YEAH! So until the next update...pray that Lincoln gets stronger, feeds well, his heart & lungs continue to perform well, no infection, the transition from IV meds to oral meds, chest tube removal today or tomorrow goes smooth. TTYL...we love you all! J&K

Quick Recovery...That Was Not Fun! But God Is Good!

Lincoln did well recovering from the lung scare. He is now breathing on his own again without the assistance of oxygen. He still has his chest tube in because it was leaking fluid. It should be taken out in a day or two. Yesterday was a great day for recovery....Kristen finally got to hold Lincoln for the first time. It's been tough waiting for 4 weeks but it was sooooo worth it. Lincoln started back on his feeding when mom got to hold him and he wasted no time getting it down while she fed him. Although Lincoln is feeding again after 24 hours, he is quickly remembering that the Pregestimil tastes terrible! He does not like to finish his bottle and they are trying to increase the amount he gets each feeding. He has to be able to eat a full 45 cc's. He is currently at 26 cc's but he only likes to eat about half that amount....so the rest they have to put into his NG tube. Pray that he can eat his whole meal on his own because this is a huge part of proving he is ready to go home. They have started switching the rest of his IV medication over to an oral version which he will be able to go home on until his next surgery. Continue to pray that this transition goes smooth. Uncle Sam & Aunt Michelle came again this weekend and got to see him extubated for the first time...that was fun! Thanks for praying us through the last 48 hours...GOD IS GOOD! We will chat soon...we love you all! J&K

Eric & Jill Doswald came back this weekend to see Lincoln...they hadn't seen him since he was born.

A Little Set Back

Today we had a little scare. We came into the hospital with the expectation of finally getting to hold him because of his chest tubes being removed today and instead we go two steps backwards with a hiccup. Lincoln had his chest tubes removed today. While removing one of his chest tubes, air got sucked up into the chest from the hole the tube was in. Air overtook the space where his right lung is (this is called a Tension Pneumothorax) . This collapsed his right lung sending him into distress. They did a less invasive procedure to remove the air by inserting a small needle attached to a syringe into the chest. They drew back almost 300 cc's of air out of his chest cavity. After taking a chest x-ray, at appeared that the needle aspiration procedure worked, re-inflating his lung. After waiting about 20 min, Lincoln started getting pale and having difficulty breathing again. After taking another chest x-ray, they saw that his right lung had collapsed again. This was because the original site where the chest tube was was not completely sealed by the bandage allowing air to come back in. This time they realized in order to get the air completely out, they couldn't do a needle aspiration. They would need to reinsert a new chest tube in a new location and suture the old chest tube hole where the air was coming in. As soon as they did that procedure the air came out of the new chest tube and his lung re-inflated and his color came back to him. Unfortunately this happenes sometimes when removing those darn tubes. So now he has all three of the old chest tubes out and one new one in back in. However, this new chest tube is only in to keep any air that might accumulate out of his chest (plural space) that does not belong and should only be in for about 24 hrs. Tonight he is still getting a little help breathing with a nasal canula. This is giving him a little oxygen boost because his lungs are trying to recover. They will slowly wean the oxygen down over night to where he is breathing well on his own again. He is very heavily sedated and should rest without any more issues tonight....but he is not out of the woods yet. This also means they had to put his feedings on hold until tomorrow. Because of the issue today...fluid built up on his lungs (pulmonary adema) and they need to get that off of him for him to breath easier. Please pray that his lungs can recover fully, no more air leaking back in, that this would not create any additional problems with breathing, the new chest tube removal goes smooth, water comes off of his lungs, he can start feeding again soon, and we can hold him soon. Oh yeah...as they inserted the new chest tube, a little Chylo fluid appeared in the tube...please continue to pray for that healing otherwise we will have to have that tube in longer. Thank for your steadfast prayers...we will give you an update ASAP. We love you all! J&K