Merry Christmas!

Joseph continues to grow and he has made it through his cold. He has a persistent cough but it is much better. The doctors said that he still needs to hunker down at home but his sisters can hold him if they wash their hands. We extended that to include the Carmelite sisters who have adopted him through their prayers. I know there are many who are praying for him and you would like to see him as well but the doctors did say "just the sisters." Here is a picture of Joseph with a few of his adopted "sisters:"


With friends like this it is no wonder he is doing better!

Joseph has made great strides with his talking. He jabbers quite well now and practices all the time. I caught him in a video clip saying "Merry Christmas!" However you have to listen closely and use your imagination ears:

This is truly a wonderful Christmas and one that we will never forget. It is the first Christmas for Joseph and our family as a group of seven. It feels like our family has grown by more than one little baby. He has come into this world with an amazing support team! We have been fortunate to have so many people around us to help with everything the last 5 months have thrown at us.


This is the season for gifts and I have thought many times about the gift that has been given to us by Joseph. He has given us PERSPECTIVE. It is a remarkable gift. It makes the reason for the season crystal clear. It shines through all the shopping, wrapping, decorating, cards, events and dinners. He has shown us the importance of the gift of life and respect for how precious and miraculous it is. We love all that Christmas brings but we will never forget this Christmas because Joseph and his miracles have pulled together and made us stronger than we ever thought possible.

The kids sing a song that we simply call "The Thankful Song." It comes from a Veggietales video. It contains one of my favorite lines; "a thankful heart is a happy heart." It is absolutely true. To be happy is to be thankful and to be thankful is to be happy. With that in mind , we are joyfully happy for all you have done, for the gift of family and friends and for the gift of Joseph and all the potential he has. We are grateful for the gift of faith, the power of prayer, the strength of the Holy Spirit and the love that connects us. May you have a blessed Christmas and an AWESOME New Year.

Love,

Kenny, Mary, Clare, Katherine, Megan, Elizabeth and Joseph

The Multiplier Effect

Joseph gets his first cold.
We did our best, but the outside world has gotten to Joseph and he has his first cold. He will be fine but when a child has gone through what Joseph has gone through, you cannot help but be more nervous when something as common as a cold hits. We are more observant, but Joseph seems to be handling it fine. He just has this awful barky cough. He is still happy and fun to be around but his cough keeps us on alert. His heart condition, in this case, multiplies the minor negative of a cold into something more. We worry more and grow more protective than we would normally.
But on the flip side--there are so many fun little things that are multiplied into greater events because of his condition. For instance, I am elated when he reaches a new milestone with his weight. He needs sleep, so when he takes a long nap it is cause for celebration. When he gives you a big smile it is somehow sweeter when considered in the context of all he has been through these four short months.
It is a fact that we enjoy life more because of our contact with this small child. He has increased our awareness of our family and friends. We certainly take fewer things for granted and everyday holds more joy because of Joseph. Our faith, while challenged, has multiplied and is now stronger. We have increased our medical knowledge. We have stronger ties to friends even though we have seen them less. I really like that the good things are multiplied to outweigh the bad.
I started reading a book called "The Wet Engine" by Brian Doyle. The author writes about his experience with his son who has a heart condition that has required several surgeries. I have only read a few chapters but already the book has had a big impact. Brian writes about his experience with the doctors and he could easily be writing about Joseph's doctors. It is good to read about others surviving the experience and coming away with a deeper appreciation of life, faith, medicine and the heart.
It is very busy around here as the kids prepare for their Christmas programs. Good fortune to you all as you prepare for Christmas. Remember to keep it all in perspective. May the miracle of Joseph multiply all the good things we share this time of year.

God bless,

Kenny

p.s.--I know---I still owe you some new pictures--

A Fine Doctor Visit

The visit to the cardiologist was very uneventful. In Joseph's situation that is a good thing. The doctor is happy with his progress and very happy with the increased blood flow due to his angioplasty. There is still an issue with the aorta and it will still need to be taken care of at some point, but for now the word is: "go home and enjoy the Holidays." I asked the doctor if we should be overly concerned at this point and he said no. Joseph is doing well and he is thriving. He is on a small dosage of a medicine to help with his blood pressure. We do not need to come back to see the cardiologist for a month. To top it off he is cleared to have the tubes in his nose removed. That will be done in a short surgery to be done within a month. The short surgeries are easy compared to what he has been through.

Joseph continues to be a happy and easy baby. He has a bit of a cold right now but still gives us a smile every time he sees us. He eats well, sleeps great and keeps getting bigger. He is 15 pounds 11 ounces and growing out of his clothes. This is a good thing!

The Christmas season takes on a special meaning this year. Joseph continues to give us the gift of perspective. We are able to look at things with a different view than before. We have an increased appreciation for Family, Faith and Friends. We are blessed with the gift of this new life that has us thinking and praying about hope, love, commitment, faith, charity community and how very fortunate we are.

I love this time of year and I even like all that goes into getting ready for Christmas. This year it is better than ever. I hope you enjoy the preparation and may you have a wonderful Christmas and Holiday Season.

All the best,

Kenny

p.s. I will post a few pictures this week and I will continue to write every weekend. Thank you for your interest.

Tune in on Wednesday

We visit the cardiologist on Tuesday, December 11. I will write a blog about the visit that will post late Tuesday night.

Kenny

A Longer Journey

This is yet another blog that has been tough to write. I hoped that there would be only good news at this point but that is not the case. On Tuesday after the angioplasty we learned that the narrowing of Joseph's aorta was more severe than hoped. It was not a complete surprise to the cardiologist but it was a tough shock for us. Joseph has been doing so well that we expected that he would come through with better than expected results. It took awhile to get used to the news. The situation is this: The aorta is the large artery that goes over the heart and drops down to the lower extremities. It has three main branches as it curves over the heart that send blood to the brain and upper extremities. After going over the top of the heart it drops down before branching to the lower extremities and most of the organs. It is after the three branches that Joseph's aorta narrows. Just like a kink in a hose the pressure is higher before the kink and lower after the kink. It was thought that the pressure differential was 30 points (about 5 is normal) before the angioplasty. When they did the angiogram to get exact measurements, they found that the pressure differential was 55! It is a great thing that they decided to do the angioplasty sooner rather than later. The normal aorta width for an infant should be about 7 millimeters. At the narrowed point the aorta was shrunk down to 2 millimeters. This was bad news. The ballooning process can only stretch the aorta so much. They were able to get the aorta stretched to 4 millimeters and that was a good outcome all things considered. A 100% improvement! I realize I am being more medical but I hope this is at least a little interesting. For more info on "coarctation of the aorta" click on this link:

http://www.chdinfo.com/aa/aa101297.htm

It has some good info although not all of this applies to Joseph's condition.

Here is a diagram of the heart that shows it better than I can explain it:

The narrowing occurs just about where the end of the arrow is where it reads "to lower body"
<--------- The plan now is to see how the aorta responds. Joseph could be in for another angioplasty or even another open heart surgery. I cannot even get my mind around that possibility. There is also a possibility that the aorta could open up on its own. I am really pulling for the miracle healing of his aorta. We see the cardiologist on December 11 and hopefully we will get some more information then. While I am writing about the cardiologist I wanted to tell a story about him. Mary and I were in the recovery room with Joseph. We had already talked to the doctor who performed the angioplasty and we were having a tough time understanding what the news we received meant for Joseph. We requested to see the cardiologist if he was available. We were told he was very very busy but he would try and stop by. Just before we were to go home with Joseph, the cardiologist walked in. He said hello to me and shook my hand but he was on a mission to talk to Mary. Mary was holding Joseph as the cardiologist walked up to her, put his arms firmly on her shoulders, looked her in the eyes and said, "he is going to be OK--you need to know that he is going to be OK." It was a huge relief to hear him say that, but what was amazing was that he said it so directly to Mary. Even before Joseph was born I learned that the hopes and dreams of our children rests mostly on their mother's shoulders. This is the case in most families. Mothers have an amazing bond with the children. But as well as carrying they hopes and dreams, mothers also carry the fear and anxiety that comes with having children. I am not saying that the dads are not connected, I am just saying that the moms carry it more and on a different level. It was incredibly astute that the doctor knew exactly what Mary needed to hear and it was more powerful that he told her while holding her shoulders. He knows what she has been through and he knows that we have more to come. It is things like that seeming simple gesture that make him a truly gifted doctor. It was a moment I will always remember. Since you made it this far reading the blog I will reward you with a small video of Joseph talking: (OK--it is more of a grunt but it is still fun to watch)

We are still so thankful for all the support from so many. We will never be able to properly convey how much we appreciate all you have done. Please keep Joseph in your prayers and know that you are in ours.

In gratitude,

Kenny, Mary and the kids.

Out of Surgery

Joseph is out of surgery and is in recovery. The doctor said that the procedure went well but the narrowing of the aorta was worse than expected. The angioplasty could not open the aorta as much as they would have liked. We will get more information and post it in the next few days. For now Joseph is safe and he tolerated the procedure well. We will be able to go home with him this evening and Joseph will not have to spend the night.

Kenny

in surgery

Joseph went into surgery at 7:20. The doctor will talk to us at about 9:20. Joseph was very good this morning.

Surgery on Tuesday

This past Monday, Mary and I took Joseph to the cardiologist for his check up. While the doctors are very happy with his growth and strong heart, there is still a narrowing of the aorta that needs to be dealt with. In consultation with the ENT surgeon, they have decided to postpone the surgery to remove the nasal tubes and instead do the angioplasty on Tuesday November 27. It is scheduled for 7am and they may keep Joseph overnight just to be sure everything is OK.

This change of plans has taken a little getting used to. We are just not quite ready for another procedure for his heart. Compared to his heart surgery this is a minor procedure, but somehow that fact is not very comforting. Joseph is so happy and looks so very healthy that we still reject the notion that anything is wrong. However, we have seen the blood pressure difference that indicates that his aorta need to be opened up some more. So, on Tuesday morning we will head down to Childrens Hospital and once again wait it out while he undergoes surgery. In this procedure they enter the femoral artery in the leg and pass a catheter up into his heart. After checking to make sure everything is OK with his ticker they will take some x-rays using dye and get the exact measurements for the balloon procedure. They will then pass a balloon into the artery and up to the aorta and expand it ever so quickly to stretch out the narrowed part of the aorta. The whole procedure will take about an hour, but from when we hand him over to when we get him back will be about 3 hours. Those are hours we do not look forward to.

Once again we will rely on the community of friends and family to bolster our spirits. We are forever grateful.

Kenny and Mary

Happy Thanksgiving

We wish you a wonderful and blessed Thanksgiving this week. This will be Joseph's first Thanksgiving celebration and we asked him what he is thankful for. This is what he told us:

I am thankful for,

1. All the prayers

2. All my family and friends that I have not even met

3. The gifts I have received

4. All the notes I received

5. My four sisters who try so hard to take care of me

6. The great surgeons

7. The great nurses and staff

8. Children's Hospital Los Angeles

9. My mom who does soooo much (he is such a softy--he started to cry when he mentioned how much he loves his mom)

10. My grandparents

11. The gift of life

12. Small miracles

13. That God loves me.

Joseph has given us the gift of perspective. After all he has been through for the first three months of his life, we know what is important. We are thankful for life itself---

This Thanksgiving, join us as we raise a glass and toast life and the love we are meant to share with one another.

God Bless,

Joseph and Family

A Short Note

All is well, but for some unknown reason, I could not log on to the Blog yesterday. I will write the blog tonight and it will be available Tuesday.

kenny

A fine week

This has been a fine week. Nothing really eventful happened and that makes for a good week. It was a time to catch up a little and to begin to prepare for the Holiday Season. Joseph has been great and had no issues this week. He smiles all the time and still sleeps very well. Here is a current video of him:

As you can see he is doing well. His surgery to remove his tubes is now set for November 28. This is just a slight change and it could change again. Mary talked to the cardiologist and they have some new technology that allows them to do angioplasty at an earlier age. Joseph may have his angioplasty as soon as December. We will just have to see how this plays out. In the mean time Joseph and his family are content to just hang out. We really miss seeing friends and family, but the time to be out and about as a family will be here soon enough. Joseph did not watch any NASCAR this weekend but he caught just a little bit of football before his afternoon nap:

Happy November to all!

Thank you for all the prayers.

Kenny, Mary and the family

15 percent

I have not wanted to write this post. Since Monday I have avoided writing. The plan was to get through the surgery to remove the nasal tubes and end the blog. All would be well and we could move on. But plans do not always go "as planned." I have heard several times in the last few years, "If you want to make God laugh--Just tell him your plans." The plan has changed. We have another issue to confront.

This past Monday we took Joseph to see the cardiologist. At first we received great news. Joseph is thriving. He is over 13 pounds and 24 1/2 inches in length. In just a month and a half since his leaving the hospital he has gone from 25th percentile in weight to 75th percentile. He is happy and doing well. Then came his echo-cardiogram. The technician looked concerned. I asked if everything looked OK and got the line I have learned not to like; "the doctor will explain it to you." In fairness to the technicians that run this test, they are not allowed to give opinions--only the doctors can. But having been through this procedure before you can certainly get a sense that something is not quite right. Mary and I exchanged nervous glances and waited for the doctor. Fortunately, the cardiologist is truly outstanding. He is caring and he is one of the professors in this amazing teaching hospital. He broke the news to us as easily as he could. Joseph's aorta had narrowed again. The doctor anticipated our first thought. He assured us that there would not be a need for another open heart surgery. This could be taken care of in other ways. Because Joseph had emergency heart surgery at three weeks old there is a higher possibility for complications to develop. Fifteen percent of the infants that have their aorta repaired for a narrowing like Joseph had, develop further narrowing. Joseph falls in the 15 percent group. His aorta has narrowed. The first time around this was life threatening because his heart was inefficient due to the pair of holes that needed repair. Joseph's heart is doing very well now and is very efficient. This is not life threatening but this gives him high blood pressure in his upper body. The blood pressure is supposed to be the same in the upper and lower body, but his is 17 points apart.

So-------what does this mean?---how do we fix this? The medical answer is a long term issue. They will deal with it first with angioplasty. It would be best to make it to a year before angioplasty but Joseph will probably have the procedure in December or January. Angioplasty is a procedure where a tiny balloon is inserted in his artery in his leg and fed up to the narrowing in the aorta. The balloon is then inflated and this opens up his aorta. This may have to be done a few times to get him to around age 8. At about 8 years old he can have a stent inserted in the aorta to keep it wide open. As he reaches his late teens the stent can be expanded to full adult opening and then he is good for life. At least ---that's the plan.

The spiritual answer is: "just keep praying." That came directly from several Carmelite sisters I spoke to this weekend. The Carmelites had their Fall Festival on Saturday and I was able to take the girls there. As I updated the sisters on Joseph's condition, I was reminded to keep on praying and to rest assured that the sisters pray for Joseph every day. It was great to be reminded that Joseph has friends in high places. I was surprised by a sister I did not recognize as we were leaving. She was dressed in white and walked straight up to me. She looked me right in the eye and said, "Mr. Lund, why don't you just pray to Mother Luisita? She needs a miracle to be canonized and Joseph needs a miracle." I was struck by her directness and calmed by her conviction. I responded that Joseph had a picture of Mother Luisita on his bed in the hospital and that we would continue to pray for her intervention. I would be more than thrilled to have her canonized for a miracle for Joseph. Mother Luisita is the foundress of the Carmelite Sisters of the Most Sacred Heart of Los Angeles. More info on her process to become a saint is at http://www.saintjoecenter.com/makesaint.html. I invite you to join me in prayer to Mother Luisita to intervene on behalf of Joseph and bring him another miracle.

Life is still good and we will follow this path to wherever it takes us. We continue to walk the path with family and friends at our side and for that we will always be grateful. Thank you for your prayers and support.

Kenny

P.S. Here is a shot of Joseph hanging out with his sisters.

A fine week

Joseph continues to do well and he is still gaining weight rapidly. He just graduated to the next size in clothes and diapers. It does not seem possible that he is growing so fast. He smiles all the time and is a very easy baby at this point. (outside of the fact that he has to be watched 24/7) He does not cry much and he sleeps well at night. Of course--by writing that I guaranteed that he will wake up four times tonight.

Joseph's next surgery to remove the nasal tubes is scheduled for November 27. It will be good to have that behind us and then the goal will be to get through flu season. He sees his heart doctor on Monday. We pray that it will be all good news.

Joseph enjoyed watching the World Series but he did not like the sweep. We will have to wait all the way until April to watch the next baseball game. That made Joseph cry. He cheered himself up by watching a little NASCAR today. He likes the fast cars.

Her are a few pictures that are much better than my writing tonight:

A new outfit

Maxing out the waistband!

Showing off his cool scar

Hanging out with Grandma Sue

Life is good!

All the best,

Kenny

Joseph watches his first World Series Game

I know, I know---I did not post on Sunday night. But that is Mary's fault. Mary is so amazing that she made it possiblefor me to go on the annual Utah trip with my dad, my brothers and some friends. Mary had some help from her sister, her mom and my mom---but she really had to work hard to take care of Joseph and the girls. I came back late Monday and have been playing catch up ever since. I want to thank Mary on this blog because I needed the time away and I had a great trip. Mary could use a weekend off, but cannot do that because she has to stay with Joseph to feed him and he cannot leave the house. Mary has handled this whole situation with grace and a commitment level that is inspiring.
Joseph continues to do well. His monitor has gone off twice due to a low heart rate (or it could have been a false reading) and that has really kept us on our toes. It is a loud alarm and makes it tough to go back to sleep. Not for Joseph---he has slept through the alarms. It is not a concern at this point unless it keeps on happening.
Joseph is growing so fast that I could tell a difference after being gone just three and 1/2 days. He looks great and so far we have managed to keep him from getting a cold. It is tough to keep him protected because so many want to see him. We would love to take him out but we still have to keep him at home.
Last night he watched his first World Series. It was not a very good game but it was great to watch it with the family. He only watched a few innings but I will always remember this and in a few short years he will be out there playing in his first baseball game. Baseball (and softball) has been an important game for our family. It is a connection between generations and there is a connection to the future. There will always be baseball and the World Series. Terance Mann in FIELD OF DREAMS says this memorable quote about baseball;
"...And they'll watch the game and it'll be as if they dipped themselves in magic waters. The memories will be so thick they'll have to brush them away from their faces. People will come Ray. The one constant through all the years, Ray, has been baseball. America has rolled by like an army of steamrollers. It has been erased like a blackboard, rebuilt and erased again. But baseball has marked the time. This field, this game: it's a part of our past, Ray. It reminds of us of all that once was good and it could be again. Oh... people will come Ray. People will most definitely come."
It is easy to imagine Joseph in the future playing and watching baseball. He will be able to do that because of the miracles he received at this young age. He will be connected to his past and will be building for his future. These thoughts of the future are so comforting and we look forward to the great times ahead. Thank you for helping to give Joseph a future.

God Bless,

Kenny

P.S. Pictures to follow on Friday