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

"Trick or Treat!" This was Lincoln's Halloween costume...We're not really sure what he is...but he looks cute anyway!

Waiting For The Ultimate Gift

There really hasn't been too much excitement to report over the last two weeks. We know you guys are feverishly praying for Lincoln...Thank you! The Dr's are just working hard at trying to figure him out and to keep him stable. He is so touchy when it comes to keeping everything balanced. The slightest little swing in medication or fluid and he gets thrown into heart failure. Even though they have been trying to wean Lincoln off of his medication, they went ahead and started the process for heart transplantation. For the last two weeks Lincoln has had some problems with dehydration and medication weans which indicate that the heart is very weak and that a heart transplant is the only route we will have to take. So over the last week they have been drawing blood and doing tests to check for antibodies. The Dr's presented his case to the transplant board on Friday and yesterday we got the insurance clearance so officially Lincoln has been listed for a heart transplant. I'm not going to get into all of the specifics about heart transplant...but if you would like to know more about it, the organization that handles all of the transplantation of organs in the country is called UNOS (United Network for Organ Sharing) and you can surf their website for more info (see the link section on this page). This is a complete switch from what we know about congenital heart defects. We are entering new waters and we are having to change our thinking in how life will now be after a heart transplant surgery. From experience, we knew what was required for us in order to take care of a child with congenital heart defects. Now we have to change our thinking and adjust to life with a completely different set of issues. As one Dr said to us, "basically we are trading one heart problem with another heart problem". What he means is that with heart transplant...it's not a complete fix. Yes, Lincoln will be able to live an almost perfect life...BUT there are rejection issues, constant medication and evaluation, being near the hospital for a half a year, not to mention he will need another transplant in 10-15 years. Don't get us wrong...we are excited for this to happen, we just have to adjust and adapt to this process. On a more personal note...the information we know about pediatric heart transplant kinda scares us...like the odds, availability, waiting and sickness. We know God is in complete control and we know he works all things together for good, however, our human nature is to worry and it's so hard to trust sometimes. Lincoln could get a heart tomorrow or we could wait for six months or he could never get one. Pediatric hearts are not widely available and Lincoln can't be on these medications waiting in the ICU for too long. Plus, if he gets sick and one becomes available, we will have to turn it down. Although we are so excited as we hear the data about how babies do with new hearts we are just worried about the process getting there....please pray for that. An even more personal note...As we were praying one night for Lincoln to receive a new heart...I turned to Kristen and said "do we realize what we are asking for?" This is a hard prayer knowing what's required for Lincoln. It hits close to home for us knowing the sacrifice it will take for one family. So as we convey our hearts to you...please be in prayer with us not only for Lincoln, but for the family that will give the ultimate sacrifice..the gift of life. Pray for Kristen and I as we go through the ebb and flow of Lincoln's condition and the routine of hospital life...it is getting very old. Also pray that we are able to take care of the constant irritations of life...bills and insurance. Well...other than all of that, Lincoln is as cute as ever and is doing good. Our days are filled with changing dirty diapers, holding him all day and reading the same books over and over and over and over. We kinda got the hint that he was tired of them when on Sunday as Kristen was reading "Brown Bear" to him, he kept peeking over the book to watch the football game on TV. Thank you all for your constant prayers and support...this is an exciting time for Lincoln and we can't wait to see what God's going to do. We love you all! J&K

Under Evaluation

Hey everyone...we are settling in to our "home away from home." There is really no new news to report...the Dr's are just trying to keep him stable. He is actually doing great and because of the heart medication his heart has been "tuned back up" and he would normally be able to go home right now...but because his heart has been poopin out days after we get home, he needs to remain in the hospital and be on his medication. They will wait a little longer to stop the medication and wean it down slowly in hopes that his heart just needs a longer period of time to get stronger. If this doesn't work we need to "talk" about being put on a heart transplant list because his heart is so weak. They have already started doing some of the tests for doner matches just in case. This week is crucial because they will make a lot of decisions regarding what's needed for Lincoln. Please be praying that his heart gets stronger everyday and he can come home in the next few weeks. Pray for us too as it is very emotionally & physically draining being down here and waiting to see what happens. Here are a few pics of the last two days. Lincoln's favorite place to be is in mommy's arms...where he is so content and happy. The second is in daddy's arms watching NASCAR and the Chargers like we did yesterday. Nanna, Pappa, auntie Heather & cousin Sydney also came to visit Lincoln this weekend...that was fun. We will talk to you all soon. We love you all! J&K

Here are just a few pictures of Lincoln at home before he started having difficulty. Lincoln is just over nine pounds now and yes, he has many facial expressions that are fun to watch.

Back at UCLA

Hey there friends! After being discharged from Children's Hospital last week...we are back in the hospital again. Lincoln was doing so great at home for about a week until he started having symptoms of respiratory distress. His cardiologist said that his heart is in a state of congestive heart failure due to the weakening of his right ventricle. When we left the hospital last week after having our scary little episode his heart function got stronger again....but while we were home last week it started poopin out again. They are not sure why it keeps getting tired....it could be: 1 - his chronic heart condition and all the surgeries he has had are tiring out his heart. 2 - a viral infection attacking the heart (called Myocarditis). 3 - his heart needs more medicine, rest and time to recover from the problem two weeks ago. Whatever it is, it is being categorized as Cardiomyopothy. There is not much you can do for Cardiomyopothy other than watch to see if it gets better and try to help strengthen the function with medicine. If that doesn't work...Lincoln will need to be evaluated for the possibility of a heart transplant. Lincoln's cardiologist encouraged us to entertain the idea of going back down to UCLA for evaluation and a second opinion because they deal with kids that have Cardiomyopothy all the time. Plus, if they can't figure it out and Lincoln needs to be put on a heart transplant list, we will already be at the hospital that does transplantation because Children's Hospital in Fresno doesn't. So here we are, Lincoln was flown down in an airplane by the Children's Hospital transport team to UCLA yesterday. We arrived a few hours later to find ourselves at our old stompin ground. Its hard to be back down here but if this is what's best for Lincoln than it's a must! It is also a praise to be able to stay with our host family again...the Hayes...they are truly a blessing! So pray for Lincoln...over the next couple of days they will watch and evaluate what his heart is doing. They will do tests and experiment with different types of medicine. They will try to get him back home again....or they might have to put him on a heart transplant list. The future is in the Lords hands and we praise him for each new day of life! We will keep you updated on his progress and RECOVERY! Thank you all for your continued love, support and prayer for Lincoln and our family. We love you all! J&K

Lincoln's Home!

Thank you all for your continued prayers for Lincoln this past week! His Life is so fragile and keeps us on our toes...but God is good and gave us warning signs that Lincoln was in distress. After undergoing a heart catheterization on Saturday night, Lincoln made a great recovery. He was extubated on Wednesday and transitioned pretty well when they took his ET tube out and started breathing on his own. His cardiologist kept him in the hospital for a little longer than we hoped because he wanted to keep a close eye on his heart function because the stress on his heart from the blockage made his heart very weak...and now attempting to breathe and eat put an even bigger load on the heart. Well...according to the echo he had before they discharged us on Monday, his heart strength is getting better sloooowwwwly. It is no where near how they would like to see it work but think it just needs time to recover. This is a huge prayer request considering he only has one good ventricle instead of two and this ventricle has to sustain him through 2 more surgeries and life...and now it is weak and trying to recover. Monday was a great day...we got to come home again! Anytime you enter the hospital with life threatening issues your mind starts to wander. Hospital stay is a tiring and scary time....so needless to say it is awesome to be home. Continue to pray for our strength...as we came home with even more medications to give Lincoln on a daily basis and the constant stress of watching for symptoms of distress has increased. Trying to manage that and keep a clean, sterile environment is very tiring! In the midst of all that....Lincoln is like a different boy. He is eating sooooo much better, his color is better, he looks happy and is even smiling...which he never did before entering the hospital. Thank you all for your support and prayers and thanks to all who came to visit Lincoln this week in the hospital...it was a blessing and it helped break up the long days a little! We love you all! J&K

Pray For Lincoln!

We would love to give you pictures and an update about the progress over the last three weeks but we have some more urgent news to give you. Wednesday (9/6) Lincoln had a scheduled appointment with his pediatrition. We told her that he had been sweating on his head and neck a bunch but his hands and feet were cold. He also had been laboring in his breathing more than usual. Fortunately he was scheduled to have an echocardiogram done the next day by his cardiologist because the symptoms we had mentioned sounded like some kind of heart trouble. Thursday Lincoln had his echo done and the results were less than pleasing. His cardiologist said that his heart looked more tired than it did a month before and there was also a potential blockage. He wanted Lincoln to have a cardiac catheterization the following Wenesday to get a better picture of what was going on inside his heart. After that appointment we went home in preparation for Wednesday. The next day (Friday) Lincoln started laboring even more in his breathing and started having a low-grade fever. He was also not eating and severely dehydrated. We felt Lincoln was working too hard at breathing to wait until Wednesday so we brought him in again. The Dr's felt that he should be admitted so they could monitor him until Wed. Through the night Lincoln had ups and downs...he was struggling to eat and was turning pale. Saturday morning while in the hospital we felt Lincoln was going from bad to worse. They ordered another echocardiogram. A different view confirmed Lincoln had a blockage in his aortic arch probably caused by scar tissue that had built up where the coarctation repair took place during his first surgery. It was significant enough to block the flow of blood to the point that his heart was overloaded and failing. They decided to rush Lincoln in to PICU (Pediatric Intensive Care Unit) and intubate him and start giving him some special heart medication to help out his heart function. Through the day they stabilized him and told us that the blockage needed to be removed but the good news was that they could do that during the heart catheterization. The bad news was that the Dr that does these specialized catheterization was out of town until Thursday. They told us we needed to have it done soon so they decided to fly Lincoln back down to UCLA for the procedure. While we were home preparing to leave again for UCLA the Dr called us an hour before Lincoln was to be transported and told us that the Dr had not left to go out of town yet and that he could do the procedure that night. We rushed back to the hospital as they were preparing Lincoln to go into surgery. The catheterization took 3 hours and they were able to open the blockage with a balloon. This is just a temporary fix and will have to be repaired again soon in the future but should buy him some time before his next scheduled surgery in a few months. Lincoln is now recovering in the PICU. He needs lots of prayers! Some concerns are that the heart and lungs were working so hard for so long that they could have been damaged...so the prayer is that now that the blockage is gone, that the cardiac function (squeezing effect and vigor of the heart muscle) would come back. Another prayer is that he can ween back off of the ventilator and breathe on his own again...this is touchy because breathing puts an extra load on the heart and his heart is already very tired. Another thing is, unless he is able to come home and his heart function and ventrical strength gets better, he will not be able to have his next surgery. PLEASE PRAY THAT HIS HEART FUNCTION GETS STRONGER AND HE CAN COME OFF OF THE VENT! Well, we will try to keep you posted of his progress as much as time allows us...until then PRAY, PRAY, PRAY! Sorry again for the lack of corrispondence...the last three weeks have been very fun and Lincoln was doing great and hopefully soon again. We love you all! J&K