Hey Everyone! It's almost Christmas and Lincoln is doing pretty good...PTL! Last night he got his 6 month vaccinations (5 of them) so he is feeling kinda sore. But other than that, things are stable. His last echocardiogram shows no change in the heart function, which is good. He is breathing comfortably, even though his lungs remain a little wet. His color and perfusion are great. His blood oxygen content (saturation level)is a little low these days but the cardiologists are OK with it as long as he looks good and has good pulses and blood pressure. You can pray that his saturation levels come up. Lincoln is doing new things everyday. He loves to watch his legs and feet as he kicks them up and down. He is starting to turn his body to his left side more...the right side is still a little weak. He loves to stick out his tongue...we'd like to think it's his personality but we think he is teething. He is also recognizing the fact that being held is sooooo much better than lying in the crib all day. If you put him down he'll let you know. His Uncle John came to visit him and take his daddy to the Charger's game for a much needed break. Liza, one of Lincoln's favorite nurses loves to hold him more than work we think. She is always telling us to go do something so she can hold him. Continue to be steadfast in your prayers...Lincoln is doing good but there are the occasional bumps in the road that trigger us to worry...and we don't like bumps. We pray for a new heart soon! We hope everyone has a merry merry Christmas! We miss you and love you all very much! J&K

Christmas time is here! For Lincoln's first Christmas, he got to help decorate his and his brother's Christmas tree with mommy and daddy. He even met Santa and got to wear his own Santa hat! We also took a trip out of the PICU into the hall and passed out candy canes...Lincoln loved it!

Lincoln and friends! Lincoln got to go visit his friend Holly, who is in a different PICU on her 1st birthday. He got all dressed up and even brought her a rose. Be praying for Holly as she started having major difficulties a few days after these photos were taken. She too is waiting for a new heart. Here is Lincoln and mommy with one of his favorite nurses, Jen. David and Michelle Aaron and Roger and Jocie Bergman even came for a visit.

Lincoln Is Doing Better!

Hey Everyone...sorry to keep you hanging with lack of news on Lincoln. He is doing good! Everyday since Monday (the day of the stroke) he has been showing signs of improvement. He is starting to fix his eyes on objects and tracking them. He is even smiling more and found the TV over his bed again. His head control is getting better also. It's amazing to see how he is already starting to compensate for the neurological losses and make those connections again...God is so good! Pray for his hearing...we are not sure if he has any hearing loss due to the stroke. He has not been responding normally to sound stimuli like he normally does. Other than that Lincoln is pretty stable. Pictures are coming soon! Talk to you soon. We love you all! J&K

Yesterday Kristen and I came in to see Lincoln in the PICU like we do everyday. When we got to his bedside we noticed his eyes were open wide and gazing off into nowhere. When we picked him up we noticed that his head would lean to the left, not wanting to straighten. All day we noticed Lincoln not being himself and noticed that his eyes never focused on us or any other of his favorite toys. We had been concerned all day and finally early this morning they did a CT, EEG and MRI scans of his brain. We found out that Lincoln has suffered a small stroke. According to the MRI there had been a blood clot that was lodged in the center part of his brain preventing blood flow to an area that affects motor function. The cells of this part of his brain are damaged permanently. On top of that, there might be evidence of small seizures. We have been told preliminarily that this was a small clot and stroke, and that the effects should be limited to only his eye movement and head control...everything else looks OK. Allthough he does not track or follow with his eyes, they are still not completely sure if there is any loss of sight yet. Obviously the biggest concern is if this affects his status on waiting for a heart...the answer so far is, NO. This hopefully should not change anything in regards to his cardiac condition, management in care or being on the waiting list. It just means that he will have to be on more medication and watched extremely close. We will have to follow up on the stroke with another MRI...most likely today to be sure there has not been any clot growth or hemorrhaging. However, the Dr's are positive that even though he has some decreased motor function...given his size and the fact that he still has a lot of growing up to do, the chances of him regaining back some of these functions are good with time and physical therapy. Obviously because of the news today, the wear and tear on us is huge! Lincoln is just not himself now and it's hard to see him not smiling or focusing on us. Emotionally this hits hard as it is just one more thing to add to the pile of concerns and problems. Granted, Lincoln is still stable and is hanging on...PTL!...but the longer we wait, the more susceptible he his to problems. Please pray for Lincoln today as we go through more tests. We will be looking forward to seeing what God does in the next few days and how His Glory will be revealed. We love you all! J&K

Give Me Morphine!

Lincoln got out of surgery at 2:30 this afternoon. He did very well...just in a lot of pain though. He was intubated during the procedure so his throat hurts. The surgeon attempted to enter through the left side of his chest but could not thread the catheter into the vein. He was able to get into the right side but that means Lincoln has two incision sites...and double the amount of pain. He just needs to rest and recuperate now for the next few days. There is not too much new to tell about Lincoln other than he has had a great week. He is now attempting to fold his hands and is smiling more and more. These are a few pictures taken over Thanksgiving weekend with the York family: "Working out" with papa York and hangin' with the cousins. We actually got to see all of Lincoln's face while we were re-taping his tubes. And yes...even a candid moment while changing clothes. Thank you all for your continued prayers...We love you all! J&K

Keep Praying....

Well, after waiting through most of our day to go into surgery...the surgeon called around 6:00 pm and said they were still busy in the OR. Lincoln's procedure got bumped to today or tomorrow...so keep praying! Lincoln is doing great right now...he just weighed in at 11 lbs this morning.

Please Pray!

First, Lincoln is doing good and we will update the blog this after noon...this is just a quick note to say...Pray Today! Lincoln is most likely going to the OR to get his Broviac line changed. The Dr's put off replacing it until after the holidays. The procedure shouldn't take more than an hour...but anytime you have to intubate and go under anesthesia there is always potential for problems...especially with a heart that is soooo fragile. They will make an incision just under his collar bone and enter the vein there. This line should last him for a long time. Lincoln should do fine...just pray hard. We will chat with you soon! We love you all! J&K

Happy Thanksgiving!

Thank you all for your prayers...God has been hearing and answering them. Lincoln is doing better since his episode of dehydration and fast heart rate. There is such a small window of margin when it comes to his fluid balance...too positive, his lungs get wet...too negative, he starts to have tachycardia. He is doing better now and he remains sickness free! He is still having some problems with constipation which has been giving him a little pain. Lincoln is making more and more noises...he even giggled for the first time. He is focusing on objects and reaching out to touch them. The one little issue right now (and there is always something) is that his Broviac line (his central venous line) snapped and broke just outside his body. This line is surgically placed and can remain permanent. Unfortunately this is his only line that he has and that delivers his all-important medication that makes his heart pump. Normally they can repair the line without going back to the OR...but...Lincoln's line is too small to repair. For now they have temporarily "jerryrigged" it to work. They are talking about taking him to surgery on Thanksgiving day to change the line. Obviously they don't want to send him to the OR if they can help it while waiting for a heart...but he needs the line. Please pray that doing this procedure won't cause any problems with his stability...and that he will recover quickly. Meanwhile, we are still here in the ICU waiting and waiting. Lincoln has been on the waiting list for 5 weeks now and so far has been stable while waiting...PTL! On Sunday, Lincoln and daddy got to watch the Chargers beat the Broncos (GO CHARGERS!). He even got a little visit from his ICU girlfriend, Holly, who is also waiting for a heart. We pray that all of you have a great Thanksgiving! We are truly thankful for God's awesome grace and provision and all of you that have been praying for Lincoln. Happy Thanksgiving! We Love you all! J&K

I'm 5 Months Old!

Lincoln turned 5 months old on Sunday and is growing fast...he is now weighing in at 10 lbs 8 oz! Lincoln had a great week...PLT! He is now holding his upper body and head up and putting his binki in his mouth all on his own. He is also starting to talk...well...baby noises. We also got moved to a different ICU due to him being a little more stable. However, pray for Lincoln today as he is currently experiencing a high heart & respiratory rate. He is very agitated and not feeling well. He is also sleeping a lot and his heart is a little more enlarged. He is not keeping his feeds down. The Dr's think he might be a little fluid positive/overloaded...or it could be an infection or a GI issue...they just don't know. Please pray that this is all it is and not an infection, flu or his heart weakening. If he is sick...we cannot accept a heart if one becomes available. Another issue is that normally Lincoln would be needing his second surgery soon. His heart anatomy would still require a need for correction because he is growing and will eventually out grow the corrections made from the first surgery. The pickle is that Lincoln's heart is too weak to do another corrective surgery and we can't put him into surgery waiting for a heart anyway...and...we don't know when he will start to show symptoms that he would need that surgery...will it be before a heart comes? Anyway, a lot to think and pray about! Lincoln got a few visitors this week. John, Julie & Alyssa Taylor came to visit along with Pam Uffelman and her daughter Sarah. That was a fun treat! The last picture that we posted here Lincoln got to pretend he was an astronaut. He was having an energy expenditure test to see how many calories he burns...he liked it for a little while. Oh...and by the way...Pam, the pink binki was for you! Keep praying hard as Lincoln is feeling bad and his heart is acting funny...also for us as it has been a very hard week emotionally! We look forward to talking to you soon...We love you all! J&K

Waiting is the Hardest Part

Lincoln is doing good...we had a little bump in the road on Oct. 20th. Lincoln had a spasm in his heart called an Atrial Fibrillation. This is when the heart rate speeds up to a dangerous rate. Usually there are reasons the heart does this...but of course with Lincoln...it's always idiopathic (an unknown reason). Lincoln's heart rate jumped up to 230 bpm without reason, and after a few different attempts to calm it down with medication...it finally did. Because Lincoln is so small and has a failing heart...his ability to fight through and handle issues like that or what they call his "reserve" is very weak. And we think that by going through yet another huge episode like he did made him lose a little more reserve making his heart even more weak. Since then, his oxygen content in his blood (his "saturations") has been low and he is now on oxygen with a nasal cannula. He has also been put on a new medication called Digoxin to make his heart beat slower and more efficiently. Pray that another "big" issue stays away because we don't know how much more his heart can take before it says "enough." This is the hardest part for Kristen and I...and Lincoln...waiting! Lincoln has been on the waiting list for a little over two weeks now. The scary thing is...heart transplant for infants are more rare than for older kids and we just don't know how long Lincoln can be in a stable condition waiting...especially when he has had big issues come up every now and then. Wow...that was heavy...but aside from all of that...Lincoln is doing well. Kristen has been working with the physical therapist to help Lincoln with head control and arm and leg strength. You can imagine how far ICU kids get behind in their development just lying in a bed all the time. We've seen him getting stronger every day with his movement and technique. As you probably have noticed, we have updated his blog site with a few more items to look at. On the right side of the page we've included a "Prayer Request" list...PLEASE be in prayer for those items as we specifically lay them out. There is also a "Link" section...there we have highlighted some of the sites that pertain to Lincoln, his condition, heart transplant, donor awareness, etc. Have fun looking at those as you become more familiar with Lincoln's needs. Thank you all for your continued prayer and support for all of us...we will talk to you soon...we love you all! J&K