Update 12/19/07

What an eventful month it has been for our family!!

Nate and Gwen flew to Utah for the Thanksgiving weekend to attend the funeral of Nate's great grandfather. They left Thanksgiving morning (at 3:00 AM because they were leaving from Omaha) and returned home on Sunday night. They day after they left I was changing Beckham's diaper and noticed blood (Beckham had also been acting really fussy which is very unlike him). I called Beck's nurse and the transplant team in Iowa City and they all thought that it would be best to go to the ER. This of course had to happen the one weekend that Nate is away from me and to make matters worse I could not get a hold of him to tell him that Beck was in the hospital. Thanks to my good friends here in Iowa I was not alone long. If you are reading this, A GREAT BIG THANK YOU AND I LOVE YOU to Erica and Courtney. Thank you also to Bret and Wade who came to the ER to give Beckham a blessing. I cannot express what great friends we have here in Iowa whether they be from our church, work or school. It makes being away from our families so much easier.

It could not be determined in the ER what was wrong with Beckham so the doctors decided to keep him over night and run a whole bunch of tests. This meant a lot of needle pokes...and for you with heart babies you can understand what I mean by "a lot of pokes" because it is very hard to find a vein in them. Each test was coming back negative which was good and bad (good because he did not have some illness and bad because we still did not know what was wrong with him). The doctors also thought that Beck might be lactose or soy intolerant, and since I am his source of food they put me on a no-dairy and no-soy diet. Let me tell you how hard that is. I never realized how many things have dairy and soy in them. I did not notice much of a difference in his stools or in his behavior with the elimination of soy and dairy.
We were released the next day with still no answers to what was wrong but we were still waiting for the results of a couple more tests. A couple days later the results of a CMV (Cytomegalovirus) test came back positive. It was explained to me that almost everyone has CMV during their life but if will show up as a sore throat or something very mild. In an immuno suppressed individual it effects them more seriously. It apparently has effected Beckham's GI tract. He is on a high dose of an antibiotic. This antibiotic can cause babies to become neutropenic (low white blood cells) and he has to have blood work done often to make sure that this does not happen. The only symptom that we have notice is that is gives him horrible diarrea. This makes his already bad diaper rash even worse. I hate changing his diapers because he screams out in so much pain. We have used so many diaper rash creams (over the counter and even behind the counter) and cannot seem to find anything that is a permanent fix. Ilex and Calmoseptine are not even working. Any suggestions? I think that we have tried almost everything. Beck is being such a trooper through the whole thing. He will have to take this med for at least 3 months. He has also recently developed a rash that has covered his whole body. The thought is that it is Eczema. I got some cream for his skin yesterday and I am waiting to see it this works.

We just celebrated Beck's 4 month birthday. He is making huge milestone. He is rolling over and batting at toys and he laughs and coo's non-stop. He has recently found his feet and is always holding at least one. He is doing well for all that he has been through. A physical therapist saw him recently and said that she is so surprised that he is not farther behind. Yesterday he was put on all formula because the doctor still thinks that he might be lactose or soy intolerant. Beck is not thrilled about the change from breast milk to formula but he is doing great. I would not be thrilled either because the new formula smells like old cheese and stale crackers (no lying!). Gwen has also hit a milestone. I can now get a small ponytail in her hair. Those with bald little girls can understand what an exciting thing this is for a mother. Nate and me are also doing great and hitting our own personal milestones. Nate recently finished his semester in school. This has been one of his hardest. He has almost a month off until he starts again. I have also reached a milestone. I think that I have come to the realization that I am not going to be able to relax....which I have also come to realize is just fine. I am always scared that Beck is going to get sick and I can't relax about it and I always seem to freak out every time that Beck gets sick. I know that he will get sick a lot and I know that he will make it through it....but I am the mother and I am entitled to freaking out about it!

We are very excited to leave behind 2007 and move onto 2008. We had such an "eventful" year (to say the least) and we are excited to move forward. We have been so richly blessed this year ands we have so much to be thankful for during this holiday season. We cannot possible thank everyone enough for all that they have done for our little family.

Here's to a very merry Christmas and happy 2008!!! We hope that you enjoy the below video clip of Beck.

Much love,
Kim, Nate, Gwen and Beckham

The Beckham Scadlock Show

We have had requests to speak about our cute little kiddo at a few luncheons and such in the next year, but today Beckham made his first television appearance. You can watch it by clicking the "Beckham's News Story" link below.

Beckham's News Story

Eric Hansen from KCCI Channel 8 came over to our house and filmed our little guy for about half of an hour and asked us a few questions. On queue our children decided that only tears and screams were what they were going to give the camera, but the guys did a pretty good job and still getting a few 'happier' shots of our cute little monsters. Enjoy.

Update 11-17-07

We apologize for how long it has been since our last update.....we know that we sort of left you at a cliff hanger. Just to update you, Beckham is now out of the hospital. He was in the hospital for less than 24 hours and has not needed to return. His Tacro levels have remained at an acceptable range and he seems to not have been effected at all by his hospital visit.

Since then we visited Iowa City for Beck's check-up. We brought the old bottle of Tacro so that it could be tested. The results came back and they showed that his Tacro was mixed incorrectly and there was almost no Tacro in the bottle. This is such a serious mistake!! We ourselves did not realize how serious this was until Beckham's transplant doctor told us that he had heard of this happening one other time. He said that by the time they checked they boys Tacro level and found out how low it was, it had already permanently destroyed the boys heart.

But enough of the glum, Beckham is doing very well and has been so much fun lately. He is smiling and cooing non-stop. He even has a cold right now and is still just as happy as can be. That is so much different than our experience with colic Gwen. Beckham is also going to be a star beginning next week. Next Tuesday afternoon KCCI Channel 8 news here in Des Moines is coming over to do a little 'feel good' piece on our little man for Thanksgiving. Better start cleaning the house. For those that are not in Des Moines, we will try to tape the special on Beck and place it on our next post.

Much love and thanks,
Nate, Kim, Crazy Gwen, and the Beckmeister

(Gwen is getting ready for next week's Holy War)

Update (10-25-07)

Back in the hospital....but not for long!

Yes, that is right, Beckham is back in the hospital. The good news is that it is not serious and he should be released later today (whew!!). The bad news is that we are back at Mercy Medical Center (nothing against the hospital itself or the staff) where Beckham was transferred to on the day he was born. This hospital brings back many painful memories of when Beckham was so sick and we did not know if he was going to live. At least this time we can make new positive memories.

Now to the reason for Beck's hospitalization. Beckham is currently on three medications. Two of the meds suppress his immune system and the other is for blood pressure. His main immuno suppressant medication Tacromulus (Prograf), is a very strong medication that needs to remain at a certain level. His levels are checked often and have been very stable and have not needed to be adjusted since he was released from the hospital in September. Beckham's level was checked on Monday and it was so low that it did not even register. His Tacro dose was doubled that night and his nurse would check his level again on Wednesday. Wednesday came, level was checked, and the same thing...level so low that it would not register. This immediately concerned Beckham's doctors and Beckham was admitted to the hospital that night. He was given a very large dose of Tacro and many tests were run to make sure that he did not have any signs of rejection. His Tacro level was checked again this morning (at 4:30 AM I might add) and his level had risen to an acceptable range. His tests also came back and he has no apparent forms of rejection. This is GREAT news for us!!

Our thought and the doctors thought for the reason for Beckham's low Tacro level is that he received a bad Tacro prescription. Two weeks ago I refilled Beckham's Tacro at a pharmacy here in Des Moines. This was a very frustrating task because Tacro is not a common medication carried by pharmacies and it is also a "compound" medication and only certain pharmacies make compound prescriptions. I had to go to three different pharmacies before I found one that would be able to fill it. We think that when the prescription was mixed at the pharmacy the Tacro was left out. If this is the case than this is a very serious mistake. Tacro is Beckham's most important medicine and it is a medicine that he will take for the rest of his life. We are going to have the old bottle of Tacro tested at the University of Iowa Hospital when we go there next week. We will now fill Beck's Tacro at the hospital. I guess that I should have realized that something was up with his medication. Beck's symptoms were actually positive ones (ironically). Since he was started on Tacro he has had a constant diaper rash (I should probably call it open sores) and a serious case of thrush that comes back as soon as we treat it. These are both common side effects of Tacro in infants. Both of these symptoms mysteriously went away when I started him on the new dose of Tacro. Even though this was probably comforting to Beckham, he unfortunately should have these side effects. I am sure that if he could talk that he would tell us that he would rather have these effects then rejection.

Other than this, we are all doing great. Our biggest trial now is learning to cope with being inside in out home all day. Our home is starting to look like a prison (well not quite). Gwen is really struggling with this and frequently throws large fits to let us know that she is fed up. We are also keeping Gwen away from others at this time because of the risk of her catching something and then passing it on to Beckham. We are allowed to take Beck out in the open air, but sadly Iowa is not warm year round.



Thank you again to everyone who has reached out to our little family during this time. We are so blessed to have such incredible friends and family. I wish that I had a chance to hug each and everyone of you. If you are reading this than consider yourself hugged!

Love and thanks!
-Kim, Nate, Gwen and Beck

P.S - We were able to have professional pictures taken of Beck. Thanks Erica for taking such great pictures...and thanks for your patience while doing so (we know that Gwen was not the most cooperative!!).

Warning: Not for those with a weak stomach.

We have been pretty busy here with the Beckhamania of frequent visits to Iowa City and Des Moines area physicians, but the good news is that we leave every visit knowing that our kiddo is doing very well.

A few weeks ago we had the unique oppurtunity to view Beckham's old heart and we thought that we would show a couple of pictures that we took of the defective organ.

This first picture shows Baby Beck's old heart on the right compared to a normal heart, lungs, and trachea that are the correct size for a child the age Beckham was at the time of transplantation. As you can see there is almost no comparison in color or size. Beck's old heart is as large as the all the other organs combined and the darkened tissue on his heart is necrotic (in Greek necrosis = dead) cardiac tissue.

This next picture is a transverse view of the tricuspid (left) and Mitral (right) valve. Looking down into the left and right atria you can see the white hardened tissue of the stenotic valves. I originally was going to post pictures of a healthy Mitral valve along side his former organ, but I understand that everyone else might not enjoy this little anatomy lesson as much as I do. Suffice to say that those valves did not function as they should.

If nothing else seeing his old heart gives us a greater appreciation of the blessings that we have received over the last 2 months (and six days).

Again thank you for everything,
Nathan, Kimberly, Gwenyth, and Beckham

Update 9-26-07

"Mid pleasures and palaces though we may roam, be it ever so humble, there's no place like home." John Howard Payne (1791-1852)

Wow....I cannot express how great it is to have the whole family at home. While in the hospital Beckham was connected to monitors that NEVER stopped beeping. We have now switched to constant Gwen screams, giggles and words (her favorite word right now is "no, no, No, NO!"). Actually, it is mostly Kim and myself that are saying "no, no, no and no" to Gwen.

(Beckham helps me with my cardiac quizzes)

Everything is going pretty with Beck and it is fun to have him home, though what an adjustment. We thought it was crazy to have one kid with Gwen...add another and there is almost a synergistic effect that keeps us going on all cylinders 24 hours a day. Beckham has also began to notice that he has a rambunctious sister and begins to squirm when he senses her getting closer. Smart boy.

(You'd think we could find one picture where he wasn't crying...Gwen will make up for it)

Though things are going as well as we could ask for there is still a long way to go. Beckham has still had small battles with hypertension, thrush, and a pretty painful diaper rash that doesn't want to heal. Those are all part of transplantation and being on immuno - suppressant medications. We are also having frequent home nursing visits, wellness checks, social services appointments, pediatrician visits, Des Moines pediatric cardiologist visits, Iowa City pediatric cardiologists visits, etc.. He keeps us running...good thing he is so cute.

Again we can't thank everybody enough for their help. We have witnessed miracles in so many different ways. The way he got his heart, the way he has healed so quickly, the help we have received from near and far...it has been absolutely amazing. And when we spend time with our cute little boy it is clear that there are many more to come.

Love,
Nate, Kim, Gwen, and mini-Becks

Beckham is home!!! (9-9-07)

We are sorry for the delay in posts...we have all had a very busy couple of weeks!


After Beckham was moved to the general pediatric floor he was able to make quite a bit of progress. Beck is now completely tube-less! His PICC line was the first to come out, followed by his NG. We worked very hard to get his NG tube out. This was not easy because it would mean that Beck would have to be eating and taking all of his medication orally. The feeding was the harder of the two. Beckham was nursing quite well for the first week of being fed by mouth, but once he was taken off the morphine he started having withdrawal symptoms which made nursing too hard for him to concentrate on. He was also losing weight and breast milk alone was not giving him the adequate calories in his diet needed to gain weight. He was also being given fortified breast milk (extra calories added to the breast milk) feedings NG at this same time, but was having trouble keeping everything down. Beckham was then started on a bottle. He was not very fond of the bottle at first and his spitting up seemed to get worse. Once he got the bottle down the nurse decided to do an experiment and take his NG tube out and see if he could handle all feedings and medications orally while still gaining weight. Beckham actually did better than expected and never had to have his tube put back in. In fact, he started spitting up less. Since then his weight gain has been slow, but steady. The doctors and staff have been so impressed with his progress and stated that Beck is their first patient to be able to nurse post transplant.

We were told that if Beckham started gaining weight then he would be allowed to go home. This became a reality when we watched his weight numbers increase but our hopes were shot when we started to notice a problem with Beckham's urine output. Beckham would go hours (5-8 hours) without peeing. A number of doctors started looking at him to determine the problem. Beckham was born with 2 inguinal hernias (like he needed this problem on top of everything else!), and also was not circumcised after birth due to the fact that he had larger issues to deal with!! The doctors thought that these problems might be the cause of his trouble peeing. The surgical and urology teams were called in to examine Beck (the surgical team was for the hernias and the urologist for the circumcision). The surgical team decided that Beckham did not have hernias, but hydro-seals. This was a relief because they do not pose immediate problems and can be fixed at a later date. The urologist determined that Beckham will need to have a "surgery" in order to be circumcised due to the large hydro-seals, but he did not want to do this to Beckham until he is six months old. We actually have the procedure scheduled for February. The out come of all of this was that the doctors believe that Beckham is fine and his peeing problem is not a big deal.

Beckham was released from the hospital on Thursday September 6, 2007. This was only 3 weeks post transplant! He left the hospital with being on only 3 different types of medications. He is now down to only 2 medications (that is almost nothing for a transplant patient). Beckham is doing great at home. We are all learning to adjust and are so glad to be in our own home and beds! I am especially glad to be home because I never left Iowa City once Beck was transferred up there. Nate was the lucky one and he spent quite a few nights at home in Des Moines during our month away. All I can say is...I love my bed and I have missed sleeping in it!

Beck is actually a very good baby and would sleep through the night if I let him (this is a huge change because Gwen was an angry baby and up all night!). I wake him up twice a night to feed him and I have to make sure that his feedings are right on time. Beckham's rejection medications have to be taken at certain times of the day and Beckham is not allowed to eat 2 hours before and 1 hour after the times his medications are due. I am constantly setting my alarm clock to make sure that I wake up. I'm sure that it will become a normal routine soon. Beckham does struggle some during the day due to the fact that he is going through drug withdrawal from all of the pain medications that he was on. We are hoping that this will pass soon for his benefit. It is very hard to watch him go through this. The drug withdrawals and the medication times are the least of our concerns because they hardest thing we are dealing with is trying to keep Beckham alive with Gwen in the house. Gwen definitely loves her brother...but the problem is that she loves him a little too much!! She wants to be wherever he is, even if there is no room for her. A number of times we have found her trying to sit with him (or on him) in his bouncy chair.

(Ten bucks says they aren't this loving 15 years from now)

We can't express enough our gratitude to the staff and medical team at the University of Iowa hospital. The care that Beckham received was incredible and we are so thankful that he was sent there. We know that we will be back at the hospital weekly and will see many of them again. We are also grateful for the kindness that was shown to Gwen. I am sorry to those at the hospital who Gwen "snubbed." You must remember that she is still the Queen!

We are also grateful to all of our friends and family members and those that we did not even know who prayed and supported us through this ordeal. We know that we have a life long battle ahead of us, but we are so grateful to have Beckham in our home...especially when we did not know if he would ever be able to come home!

On a important note, we need to add the following detail:
Beckham's transplant brought on a lot of problems and one large problem is that he is now considered "immunocompromised" (a state in which the immune system's ability to fight infectious disease is compromised or entirely absent). Beckham will not be able to be taken into public places for a year and visiting Beckham in our home will require you to be in very good health. We ask that if you wish to visit, that you are not in large groups and that you have not had an illness, been around someone with an illness or think you may be getting an illness. Also, if you have had the "Flumist" flu vaccination nasal spray you will not be able to be near Beckham. Beckham cannot receive any "live" vaccines (chicken pox, mmr, etc.) and the Flumist is considered a live vaccine. You can still be around Beckham if you have had the Flu shot instead. We have plenty of hand sanitizer and sanitizing spray at our home and we ask that you use this whenever you are here. Please know that this is not meant as an insult!! We follow the same precautions. Gwen thinks that the hand sanitizer is a treat and immediately licks her hands after we put it on her. Gross! We will be grateful when a year is up and we are able to come out of our "bat cave!"

Love and thanks,
Kim, Nate, Gwenyth K, and Homeboy Beck

Update 8-28-07

(Gwen gives the same kisses to Beck that her forehead gave to a couch's hard plastic armrest)

The BeckMan is doing great and so is our family. Things are quite busy with the little guy progressing so quickly. He is now on the general pediatric floor and learning to eat and do the things that babies do. It is so much fun to hold and cuddle him now that his lines and chords have been greatly reduced. He is down to a PICC (peripherally inserted central catheter) Line and a NG (naso-gastric) tube. He also seems to be much more comfortable being held and even prefers it, which nobody is complaining about. Well nobody besides Gwen who has about a 2 minute Beckham limit, though she loves spending time with him a few times during the day and even says "Beeb bee" when attempting to say his name.

While we don't have a date, we may be able to take him home sooner than later. Considering what he has been through he is doing absolutely amazing...your thoughts and prayers have helped him and our family through what has been an incredible ride. I guess I should say that it continues to be such a ride, but with higher highs and less lows.

Con Amor,
Nate, Kim, Gwen, and Señor Beckhamo

(Wussup?)

Update 8-22-07

"...by small and simple things are great things brought to pass..." Alma 37:6

(Gwen's first of many kisses given to Beck today)

Every time we write it seems I have the pleasure of announcing a new milestone and today is no exception. Early this afternoon they removed the ventilation machine that had been breathing for Beckham and he is now tubeless. Not only did they remove his breathing tube, but they also removed his foley catheter and a few more IV lines. He becomes less bionic each and every day.

Having less artificial support around our kiddo has made it so we can get closer to the little guy. We both held him today and can now hold him whenever we want to; before holding him required the effort of setting up and taking down the big tent at a circus, there was so much that went into the event. Gwen even gets some time with her Little Bro. We let her sit in the crib with him and we were able to see her really respond to him for the first time. She soon loved the attention of giving him attention and he had all the kisses and "gentle" pats on the head he could ever ask for. Those two are going to be good friends. When we went to take Gwen out of the crib it was another battle as she really began to enjoy her time with her brother. Hopefully as time and Beckham progress she will be able to comprehend that he is another member of our little family.

As things continue to progress we begin to hear the outside world calling again. I will be starting school on Monday and Kim will stay here with the little guy. Her parents are still here and mine will be taking over Gwen duties this weekend. Though the last few weeks have been an adjustment for her it is nice that this event has afforded her the oppurtunity to spend plenty of time with her grandparents.

Though faint we have also been able to hear him cry for the first time since the day he was born. That doesn't seem like a commonly celebrated moment, but for us our moments tend to be anything but common. Once again we are so grateful for the prayers and efforts of our friends and family. Everyday we learn of something new somebody has done to help us in a million different ways. While it is too bad that it takes something so extreme to bring people together, it is amazing how people do go out of their way for someone they may not even know when such difficult events arise.

Thank you all.

Love,
Nate, Kim, Gwen, and Super Beck

Happy Transplant Day +1 (8/17/07)

As most of you know Beckham received a new heart yesterday and we couldn't be happier with how the whole process transpired.

(Getting ready to go down to the OR)

Beckham went into surgery yesterday at around noon where they got him ready for the event to come. His heart didn't actually arrive in Iowa City until close to 2:30pm. What they do is try and have Beckham open and his old heart removed as the new heart is coming through the OR doors. That way Beckham has a minimal time without a heart and the new heart spends minimal time outside of a human body. We didn't get a whole lot of updates during the process, but the couple times that they called us it was to tell us how well the whole process was going and they gave us estimated time lines of when he would be returning. What was great is that everything went faster than they expected and he was back in his room at 6:30 that night without any unexpected complications.

Before the surgery took place we told them that they could keep his old heart for educational purposes being that this is a University hospital. They are actually going to now put his heart in a museum that they have because it was so unique in its defects. His heart turned out to be much worse than expected. Not only was the mitral valve extremely malformed, but the other valve (the tri-cuspid) was equally inefficient. Neither valve was anatomically correct in its form. Both valves sat flat against the walls of their respective chambers and weren't connected to any chordae tendinae (little chords connected to the valves that help in the blood flow process). Looking back at how poorly his heart had formed it is amazing he did as well as he did up until the transplant took place. In the picture to the left (of a normal heart) you can see the chordae tendinae are shown connected to the tricuspic valve and the mitral valve. He didn't have either of them connected at all as both valves were pressed against the surrounded walls. Later they are going to let me see his old heart and I'll take some pictures.

Since he has been back from surgery he has done very well...he came back looking like he had just returned from war (which is common in surgery), but he cleaned up quite nicely. In fact he looks great and is doing great so far. They have slowly been weaning a variety of drugs and interventions. They will continue to do so everyday as long as he tolerates the tapering. His scar should even be fairly small (eventually) as they didn't use stitches, but glue. They have plenty of padding over it right now so that it will not be aggravated, but it should eventually heal very nicely. Kim saw the scar of a little girl that had a transplant just last October and said that it looks good. It is white and flat without any keloid (large bumps) characteristics.

(A few of the many staff members working on our little guy after the operation)

Talking with physicians (and just watching them the last few days), Beckham's new heart couldn't have come at a better time. He was beginning to show signs that he could start going downhill at anytime. We can't express our gratitude enough for the family that decided to put their beloved child on the donor list. We will likely never know who it was, or even where the heart came from, but their selfless decision at such a difficult time in their lives will always be appreciated and will provide the means necessary for Beckham to live a great life. Hopefully this well help us all to check 'yes' on that donor box next time while renewing our driver's licenses.

We are all exhausted after such a long and emotional day, but we couldn't be happier with how things have gone up until now. They are quick to remind us that many difficulties are yet to come and that Beckham still has a lot to accomplish in just the next few days, but they are also very pleased with the progress that he has made.

The staff here has been incredible. Dr. Davis did the surgery and we are told that his experience with such an operation is surpassed by few. Dr. Edens is Beck's transplant physician and it has been great to work with him. He has worked night and day for our child and we couldn't be more grateful for his efforts. There is also a large team of physicians, nurse practitioners, nurses, respiratory therapists, social workers, and many many others who deserve a great thanks. The staff here at University of Iowa has been great...it is safe to say we are converted Hawkeyes! (though still Utes first ;-))

Thank you so much for your prayers and efforts over the last few weeks, though we hope that they will continue as there is still much to accomplish. Miracles have happened to our little family over the last few weeks and we have come to learn so much.

Thank you to everybody that deserves a thank you.

Love,
Nate, Kim, Gwen, and the 'new and improved' Beckham

(This picture was taken just this morning. Good looking kid, eh?)

PS - Another few things we should note. The same day that Beckham got his heart a cousin of ours went home after having a transplant in beginning of July. You can read Noah's story as many of his issues our similar to what we are now facing. We are grateful to Noah and these cousins that we didn't even know before the last couple of weeks for helping us have a story and people with whom we could relate.

Oh and big Beckham scored his first goal since moving to the United States on Wednesday night. I was watching the game and as he scored I thought "Okay Becks you have yours now we need ours". It was in that same hour that Dr. Edens received the first call that there was a potential heart for our little boy. Relevant? Probably not, but cool none-the-less.

No Longer the Tinman! (8/16/07)

I would very much like to announce that Beckham is currently in surgery where he is going to get his new heart! Wow, today has been a wonderful whirlwind and we now have a heart for our little boy. After only 10 days on the organ waiting list we found out early (4am) this morning that there was a potential heart for Beck; he is now in surgery getting prepped and the heart is in transit.

Thank you so much for your thoughts and prayers to this point, though we know that transplantation is only the end of one battle and the beginning of another. With that state of mind we ask for your prayers to continue...we know that Beckham will continue to be a strong little fighter.

A more detailed update on how everything goes will come either tonight or tomorrow.

Love,
Nate, Kim, Gwen, and soon to be 'refurbished' Beck

Update 8/14/07

(Kim was able to hold Beckham for the first time in a week yesterday)

Hello from Iowa City. We are just hanging out in the University of Iowa hospital and tomorrow we will be celebrating Beckham's second week of life. Looking back at some of his tougher moments in the beginning, getting to week two is a miracle in itself.

As these last few days have passed there have been a few changes this time. Beckham is starting to have increased issues with back-flow from his heart back into his lungs so they are beginning a few treatments to try and ease that problem. One thing that they are doing is giving him something called prostaglandins that will re-open a little hole that most newborns have, but it closes quickly called a PDA (patent ductus arteriousus - you can click for more info). Though having that open is usually considered a defect in his case it is one more way that they can decrease pressure and hopefully back-flow from that left ventricle. Aside from this he seems to continue to be 'critically stable'. They will also begin a few interventions that will help prolong systematic function should he spend a long amount of time waiting for his heart.

One cool milestone is that he is now receiving breast milk nutrition starting at 2 ml/hr a few days ago and tonight he will be up to 14 ml/hr which is enough to provide most of his needed nutrition. Even better he has been tolerating these feedings well.

We are holding up here in the hospital watching The Office episodes, playing with Gwen, and wandering the halls...though getting through the duldrums of hospital life is not as difficult as waiting for his heart. We are only on Day 8 of being on the list, but it already seems like it has been forever. Gwen does help the time pass as she is not only our entertainment, but seeks to entertain all around her. One nurse noted today that she should be the Unit's mascot...when we no longer have what it takes to entertain the princess she makes her way around the halls making sure that each and every staff member has had a chance to dote their praises.

We continue to be amazed and extremely grateful for the help we receive from family and friends. Thank you so much...we couldn't do this on our own.

Keep praying for our little dude.

Love,
Nate, Kim, Gwennifer, and Beck

Update 8/10/07

Gwen is still not sure quite what to think about everything

I would like to apologize for the delay in updates...I know many of you anxiously await news, but the reason for the silence is good news. Little dude has been very stable the last couple of days. In fact he has hardly had any change in status for the last couple of days which is what we need until he can get a new heart.

My mom and brothers left and Kim's parents are now here. I can't thank either of our families enough for the help with Gwen. She does pretty good here for about an hour, but then goes a little stir crazy. When that happens it usually means bringing pain upon herself in one way or another...her head tends to find every sharp edge in the building. Guess we are in the right place for her too.

Thanks for your thoughts and prayers and we really hope we can give some news about a heart coming this way soon.

Love,
Nate, Kim, Gwen, and Becks

Think he is being monitored close enough?

Update (8/6/07)

To say today has been a roller coaster does not even begin to describe the whirlwind that we have been through, but all things aside one very important event took place. Beckham's name is now on the national waiting list for organ transplant.

While I won't go into the various details, it suffice to say that due to a few insurance issues we were almost shipped to St. Louis, MO today and now we should be able to stay here in Iowa City. I have not seen the Micheal Moore documentary "Sicko" in which he discusses the problems with America's health care system, but I am sure our case today would qualify for some screen time. Thanks to our doctors and a social worker going to bat for us we should be able to stay. After that got sorted out (the ordeal began early this morning and lasted until about 5pm) we were able to sit down with the pediatric cardiologists and really begin to discuss Baby Beck's future.

At 3:oopm the various disciplines involved with Beckham's care had a meeting to discuss the best course of care to help him out. They find new problems with his heart daily and it is beginning to cause problems with his other organs too. Surgery is an option, but extremely risky so that makes transplantation the best method of treatment at this time. So now we have to 'hurry up and wait' for a heart to come. The sooner his heart comes the better, but if we wait too long methods such as surgery will become necessary to buy time until a heart replacement becomes available.

We had a long sit down also with Dr. Edens, Beckham's transplant cardiologist. He went through each stage of transplantation with us and what we can expect as this situation progresses. They are as follows:

1) Initial visit/evaluation
2) Listing for transplant
3) Waiting for donor heart
4) The heart transplant surgery
5) Post-Transplant Recovery
6) Living with a transplanted heart

We are kind of doing number 2 and 3 at the same time. He has been listed and we are waiting for a new heart, but not all the details of the listing have been finished. Number 2 should be wrapped up by tomorrow and then we just pray long (hopefully not too long) and hard for 3 too wrap up too.

While the algorithm that determines recipients is fairly complex we do know a few things that help us understand his chances. Most important he is number one on The University of Iowa's list and automatically becomes the recipient should a heart his size and blood type become available in the state of Iowa. After that there a various components that go into where he ranks on the list of hearts procured in other states. He also has A+ blood and (without going in to the logistics or physiology) that means that he has more hearts that will match his needs. What does work against him though is his age and size. There aren't a whole lot of hearts that small that become available, but it happens all the time and we have hope in his case too. Also in a sort of catch 22 situation he is able to accept hearts from donors up to about 7 months of age because his heart is so abnormally large that he has space there to accept a heart that would normally be too big for his little body (Normally his heart should be just larger than his little fists...it now reaches almost clear across his chest).

As for the care Beckham has received over the last few days we can't express our gratitude enough. The nurses at Mercy Medical Center were awesome. We can't remember the names of everybody that we would like to, but Steph, Becky, and Wendy were a few of a many that made our stay great. Thank you to everybody there that took part in his care.

Here at University of Iowa Hospital we have also been very impressed. The doctors and staff seem very confident in their abilities to care for our little boy. It is awesome to have a plan of action that could possibly save his young life. My dad and I were just saying tonight that if everything works out well here we will definitely become life long Hawkeye fans.

We also want to thank all of our friends and family that have given us or offered support. We (honestly) couldn't do it without you. We are grateful for every email and every call we receive...I'm just sorry we can't respond to them all.

While Beckham gets sicker every day it was great to know that there is a possible solution in the future...no doubt in part due to the efforts of all of your fasting and praying.

Love,
Nate, Kim, Gwen, and Beckham

I almost forgot...today did have one event that made at least a moment of time one of the best few minutes since this ordeal began. Gwen was able to see her baby brother for the very first time (I'll put the picture up top). This is obviously a confusing time for her, but she did spend few moments just quietly watching her brother (and if you know Gwen even a single second of sitting still is an anomaly...we owe my mom and brother a huge thanks for watching her the last few days) and she even gave him a kiss. Having some time with Gwen helps us get through each day more than anything else ever could.

Update (8-5-07)

Things have become increasingly critical with Beckham and he is being transferred to Iowa City's University of Iowa Hospital, where he will receive more intense treatment. If you need to contact us you can call our cell phones, but I can't promise we will be in a position to answer so you can also email us at [email protected] would probably be the preferred method of contact. You may also continue to use the message board that is found at the bottom of each post on this website.

Thank you for your thoughts and prayers...we will continue to update Beck's condition as we learn more.

Love,
Nate, Kim, Gwen, and Beckham

Beckham is Born 8/1/2007 @ 11:54am

This website was previously used to update our families how life is going in Iowa. Due to the overwhelming response of all of our wonderful friends and family, Kim and I are going to now use this website to give updates on our new little guy and the adventures our family will now face . We want everybody to know how much we appreciate every phone call, email, text message, prayer, and moment of caring. Events like these really help us to realize how great our lives are and how great the people around us have always been.

Because everybody is receiving this information at different stages in the process I will begin with (logically) the beginning and try and explain how our little guy is doing.

Baby Beck was born at 11:54am on Wednesday the first day of August. The labor process went well and Kim did great. All seemed well and they handed us our baby boy to cuddle and woo which was a bit different from the Gwen experience as Beckham weighed 8 lbs. 11 oz. and is 20.5 inches long. Our little peanut Gwen was a whopping 7 lbs. 2 oz. (she continues to be a little peanut) and so we were proud of a new big boy.

We held Beck for about an hour before I decided to go home and pick up big sister Gwen to see her new little brother. It was as I was readying to leave that I received a call from Kim informing me that in a matter of no-time, the nurses had detected a heart murmur and Beckham was rushed to the NICU at Blank Children's Hospital to be further evaluated by pediatric cardiologists. I rushed back to the hospital without Gwen (who was being watched by our wonderful friends the Giles) in time to see him in that NICU as they were planning to transfer him again; this time to Mercy Medical Center's NICU where they are more equipped to handle cardiac patients.

Beckham has a congenital heart condition called Mitral Valve Stenosis. It is a rare cardiac anomaly in which the mitral valve is narrowed, stiffened, and in his case even incomplete. It is very serious and the pediatric cardiologists told us that the situation is grim. (The picture on the right is a diagram of the heart you can use to reference terms)

As you can see from the picture on the left (taken from the Mayo Clinic website) the hardened mitral valve (also referred to as the bicuspid valve) doesn't allow blood to flow properly from the left atrium to the left ventricle. Two major complications arise from this - 1) Blood backs up in the left atrium and eventually enlarges the heart. 2) The left ventricle is the last stop for blood before it goes to the rest of the body so when it isn't there to be pumped the body isn't getting the needed blood or oxygen. This obviously leads to many more problems.

To relieve the pressure in the left atrium they did a little procedure (an Atrial Septostomy) in which they sent a balloon tipped - catheter (deflated) through his umbilicus...up through the inferior vena cava...into the right atrium...through a little whole in the septum wall that separates the right atrium and the left atrium (which is found in newborns)...and into the left atrium. Once there they inflated the balloon and gave it a tug to try and increase the size of the hole in the atria. Cardiac demolition? By doing so they hope that the pressure within the left atrium could be somewhat alleviated. Due to a hardened septum wall they broke 2 balloons before successfully pulling the third one through. They then removed the catheter and waited until the following morning to do follow up testing.

This morning our pediatric cardiologists (3 different ones) visited us today and did more X-Rays and a very thorough echocardiogram (ultrasound of the heart). They found that the procedure had done its job and there was less pressure in the left atrium. They also found new problems in the process. They now found that neither of the valves on either the right side or left side of the heart are working properly. There is valvular leakage found on both sides. They rate the severity of the leakage on a scale 1 - 4 and Beck is at a 4...most severe. That causes problems in that blood doesn't flow to the body delivering oxygen to his extremities and organs. It also means that blood is backing up in the left atrium...potentially all the way back into the lungs. That has happened with him though they are giving him medications (Lasix) to alleviate that issue. It is called pulmonary edema (fluid in the lungs) and can make breathing very difficult if left untreated. Beckham is currently on a ventilator that breathes for him, but he is a little bruiser and he has been trying to breath by himself over the vent.

Now we just wait and see how he grows. He is too small to receive a mitral valve replacement at this time without a huge risk to life; though if push came to shove it would be attempted. Hopefully his heart will grow and mature a little bit more and be able to provide just enough flow that we can get to the point of a safer surgery. There is no chance for things to fix themselves...he will need surgery of some sort someday. We will know a bit more in the days (weeks?) to come. If he doesn't grow and his heart doesn't provide the needed flow then they did mention that there could be the need for a heart transplant. If so, they don't do that in Des Moines, and there would be a whole slew of new information and decisions.

As for his current condition a good description would be 'critically stable'. His condition is critical, but he is stable for now...it is the future that remains uncertain at this time. We will continue to update his condition as we know more and as we can. I just wrote everything above while sitting in his room trying to remember the day's events...I can't guarantee that all the medical information is presented 100% correctly (and I'm too lazy to reread), but it is presented with my mind's best effort (which was nothing to write home about in the first place). If you want to do more research on your own there are great websites such as the Mayo Clinic website.

I hope the above helps, but most importantly we need to give thanks to everybody that has helped us and prayed for us over the last two days. Our wonderful friends from church, my work, Kim's work, school, and our friends and family in Utah have been amazing. The response has been unbelievable. I wish I could thank everybody in name, but I admittedly haven't even always had the presence of mind to know who I was talking to during supportive phone calls. There are a large group of people that deserve a special thanks for going above and beyond for us these last two days in many different ways (If you read that and thought "Are they talking about me (us)?" the answer is yes).

We rely greatly on our Heavenly Father at this time and we are eternally grateful for the spiritual support that has been offered on our behalf from our friends at church and from our wonderful friends of different faiths...it is amazing how a cause like our Baby Beck can unite so many beliefs into one. We have had many visits from Bishop Pence and are grateful for how Waukee Ward has offered us so much support and given us so much.

While we don't know what the future may hold, we do know that if we do our part this experience will make us better and stronger people...regardless of outcome. Our Baby Beckham, though small, has already helped us to learn many of the most important lessons in life.

Our ward will be holding a special fast this Sunday (8/5) for Beckham, we invite all of our friends and family to fast and pray for him on this day.

Love,
Nate, Kim, Gwen, and Beckham