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

Community and Smiles

Big Smile

Bigger smile!

I finally caught his smile with the camera!

Joseph is doing very well. He went to the pediatrician on Thursday and Dr. Yim thought he looked great. Joseph is almost 11 pounds and he has kept up with the ounce a day gain rate. His ENT doctor saw him this week as well. He liked his progress as well and they are working on scheduling his surgery to remove the nasal tubes. It should be sometime before Thanksgiving.

We sort of lost track of a couple of months through all this. I cannot believe that we are talking about Thanksgiving--but we look forward to its arrival. This will really be a special Thanksgiving as we have so much to be thankful for. It will be even better if he Joseph can be done with his bionic nose.

Last week I wrote about the miracle of breathing for Joseph. Tonight we were watching the video tape of the day he was born. We had not seen it yet and it was amazing to relive the time just two months ago (Joseph turned two months old on the 12th) when he was born. On the tape I heard myself mention that it seemed like he was having a little trouble breathing through his nose but I kept reassuring Mary that all was well. Little did I know that a few hours after that moment I would be in an ambulance with Joseph heading to another hospital while Mary stayed at Verdugo Hills Hospital. I am glad we did not watch the tape until now, because we know that it all turns out OK. In fact it turns out better than OK! These two months have taught us more than we could have imagined. We are closer as a family and a community. We have a closer relationship with God. People who have never even seen Joseph except through this blog have a closer relationship with God. I listed many of the faith communities that have been praying for Joseph in a blog back before his heart surgery. I think it is worth mentioning again. Joseph was in the care of:

The Franciscans

The Holy Cross Fathers at the University of Portland and Notre Dame

The Carmelites Sisters (Mother Regina Marie was on pilgrimage and had a whole busload of religious praying for Joseph--and cheering when they heard good news!)

The Dominicans (especially those up at Flintridge Sacred Heart)

Sisters of Saint Joseph (alerted by Sister Maryann who is at Saints Felicitas and Perpetua)

The Jesuits (Fr. Schall is a relative and teaches at Georgetown)

A cloistered nun in the Midwest who takes prayer request over the Internet!

The parishes of:

Saints Felicitas and Perpetua (The church and the school were all praying--thank you Fr. Paul and Mrs. Aparicio)

St. Bedes

Holy Family

Pope John Paul II, in Montana---yes -- Montana!

Our Lady of Lourdes

St. Andrews---Fr. Paul Sustayta is there. He was a classmate of mine at St. Francis High School. I asked him to pray for Joseph on the day before his surgery. Fr. Paul got in his car and drove down to the hospital to spend time praying for Joseph. The next week at mass they mentioned Joseph in the intentions. A lady walked up to Fr. Paul and asked, "just who is this Joseph Lund---They have been praying for him over at HolyFamily too!"

There were churches and people in Washington, Oregon, Utah, Massachusetts, Georgia, Florida, Indiana, Kansas, France, England and Scotland.

I know of individuals who were praying for Joseph from several different faith traditions. There were so many in fact that I have often thought that maybe Joseph is destined to grow up and assist with the unification of the church.

Many of the staff of the hospital told us they were praying for Joseph. We even received notes from people we do not know who heard about Joseph and were adding their voices to the chorus of prayer.

I am sure that I have not listed all of the faith communities that united around this little child. There are many more and I will probably have an addendum next week. But the point is that it has been a miracle that this single child could bring about so much prayer. I have often thought about this and I am absolutely convinced that this is the case. People have shared stories with us about how this has helped them with their faith, their family, and their perspective. The power of prayer was felt so strongly by our family that there could be no doubt of its presence. We never felt alone even at one in the morning while pacing the halls of Children's Hospital. Once again with thank you for your miracle of prayer and I hope you feel the power of prayer as strongly in your life as we have.

God Bless,

Kenny

Time

How about a song?



Ready to sleep!


How is it that such a little kid can take up so much time? Mary and I keep asking that. He sleeps and eats. Those are the two highlights of his day and night. It seems simple, but any parent can tell you, a little one can take up quite a bit of your time. Now this is sounding like a complaint, but I can assure you it is not. It has been a great week. Joseph has done well. He continues to grow. We watched the baseball playoff games together and even some football and NASCAR. He was very happy that Notre Dame got their first win of the season---although I scared him a bit when I celebrated an interception as he was falling asleep. While Joseph hung out at home we mixed in soccer games with the girls, work, practice, school, homework, church, and a few movies at home. Hunkering down is pretty good when you are with family. Mary has many scheduling issues to deal with to keep things operating. She has done an amazing job of keeping everything running somewhat smoothly.

We have been in a good rhythm, however, Joseph has given us a few scares just to keep us on our toes. The tubes in his nose get clogged on occasion. We have to suction them out several times a day. I will spare you the gross details but I will say that it takes a little getting used to. He has trouble breathing and he is still learning to breathe through his mouth when his tubes are blocked. He will have to master this skill before the surgery to remove the tubes. I think I have written before that infants are "obligate breathers." This means that they have to breathe through their nose because they do not know to open their mouth to breathe. Joseph had 100 percent blockage of both nasal passageways. What is interesting about this fact is that Joseph went two days after he was born without a breathing tube. Medically this is not supposed to happen. Infants with 100 percent nasal blockage have to be put on a breathing tube right away. They figured that he had some opening on at least one side because he was able to keep breathing. The doctors were shocked during the surgery to find out that he was completely blocked. Devine intervention is how I explain it. Joseph had several miracles along this path and I thought it was important that you know about the first one he received. The prayers kept him breathing.

We are and always will be, grateful for what Joseph has received. Until next week---

Kenny and Mary

Gaining weight!

Joseph continues to do well and his main goal is to gain weight. I sure would like to have that as my goal but weight LOSS should be the goal for me. He is gaining about one ounce per day. He is over 9 pounds now and he is getting very good at eating and sleeping since most of the time he is doing one of the two. I think you can tell from this picture that he is looking a little "rounder."

He is still hunkered down at the house and he cannot have visitors. The pediatrician is worried about him getting the flu or a flu like illness called RSV. This illness has put many healthy kids and infants in the hospital with breathing issues. He will have a vaccine for it but it takes three months to administer the vaccine. So, we are still being very protective of him and that will continue on into the new year. (insert heavy sigh here) His sisters have to take showers before they can hold him when they come home from school and we are buying Purell by the case now.

His next surgery is in about six weeks. The surgery will be to remove the tubes in his nose. He tolerates the tubes very well and does not seem to mind the suctioning that we have to do to keep them clear. All in all he is a pretty good baby at this point.

I finally caught a smile on camera and it is in this video clip:

That is Megan holding him. Joseph's sisters still complain they do not get enough time with him but that is because there are four of them and only one of him. Patience is a virtue!

This blog has been a great tool to get the word out on Joseph. We will keep it going until after his next surgery, but it will only be updated once a week since there is not as much going on. We will update the blog on the weekends (which probably means late Sunday night) so you can check it on Mondays.

It is still amazing how many people have read this blog. We get notes and emails from people who we had no idea were reading this. It continues to be very uplifting and we are able to feel connected to this community pulling for Joseph. We offer prayers of thanks everyday for all of you and for the health of Joseph. Please continue to keep the babies in the NICU and CT-ICU in your prayers.

Thank you and God bless,

Kenny and Mary

Pictures and a movie!

Almost a smile

Thinking about Geometry

cars on the crib-fish on the blanket-sport

stuff on the outfit and no pink

Practicing Karate

Is it time to eat yet?

Joseph "the movie" --coming soon to a theater near you!

(hit the play button)

Life is wonderful!

Kenny

Two Doctors--Two good reports

Joseph was seen by his cardiologist (heart doctor) on Monday and his ENT (ear nose and throat) doctor today. The doctors agreed that he is doing well and he just needs to stay healthy and keep growing. We thought that the cardiologist was going to want to see him at least every two weeks but he said to come back in 6 weeks. That was a good indication that he is doing well. Dr. Lewis, the cardiologist, was so good to him and he commented that he was the best behaved infant that day. I think that Joseph is comfortable in the medical world because he spent his first five weeks of life there. Maybe that will lead to his being a doctor when he grows up--That would be cool.
Joseph is being a little fussy lately during the day but he sleeps like a champ at night. We are worried he may be getting a cold. We really hope not because it will make breathing through his tubes that much more difficult. He almost at the halfway point on the tubes and they will come out in about 6 weeks. Unfortunately, that has to be done in surgery. After what he has been through it should be a piece of cake.
The visit to the cardiologist took us back to Children's Hospital. It was a little eerie being back and brought back the emotions we felt as we walked through the hallways. It was great to leave there and go home. It is a fine place, but it is soooooo good to have your child leaving there with you.
We were able to visit the NICU while we were there. We saw a few of the nurses that took care of him. They said he looked great and bigger. Nurse Dana said she reads the blog so ---HELLO DANA! Thanks for taking care of Joseph! Nurse Lindsey reads this too --- so a big shout out to NURSE LINDSEY. 3rd floor NICU ROCKS!
The blog is a little random tonight--lack of sleep will do that. I will have some pictures to post tomorrow. Sorry there are none with this blog. Thanks to all who continue to read this and to pray for Joseph. You ROCK too!
God Bless,

Kenny

Finding a routine

OK OK OK I did not make the Thursday night deadline for the next post. I had the best intentions. I had the camera in my hand and was heading to the computer when there was a request by my kids to spend some time with them. Somehow I misplaced the camera and did not find it until today. That sounds like a pretty thin excuse but it really happened.

We have shifted into a routine again but it is one that is easily disrupted by the cry of our new little child. He has a pretty good attitude but I think he got a little spoiled at the hospital. He always had someone right there and now he has to learn just a little patience. Joseph continues to feed well and he gained five ounces from Monday to Friday. He is sleeping OK at night and only wakes up a few times to feed. We really appreciate that! Here he is resting up in his new bouncy chair before feeding again.


Now to Children's Hospital. I wanted to write about how anyone can get involved with the hospital. The hospital is like good insurance. You hope you never have to use it, but if you do you are really glad it is there. In our case the hospital may very well have saved our son's life. They have amazing staff and the hospital of the future will be completed in 2010. The hospital is supported through incredible fundraising efforts and through service and support guilds. Our contacts with the groups we are involved in really came through for us. Bonnie McClure coordinates all the guilds for the hospital. I think there are about 30. I mentioned before that Mary and I are involved in the Spiritual Care Guild and I am a member of the Men's Guild. The Spiritual Care Guild supports the religious services at the hospital. There is a full time Catholic Priest at the hospital and many other religions are represented. They even have a training program to teach chaplains for other hospitals. The guild is a great group and the fundraising events are creative and fun. The men's Guild is newer and hosts a yearly Texas Hold 'em Poker Tournament. The next one is in May 2008. The dues are just 50 bucks and the commitment is fairly minimal. I have been tasked with finding at least two new members. Please let me know if you join so I can get my free poker chips for finding new members. Bonnie sent me this information on how to join: "For anyone wanting to join the Spiritual Care Guild or the Men's Guild, please direct them to our office - 323-361-2367. Connie Harding is the president of the Spiritual care Guild and John Winnek is the presidents of the Men's Guild. Another easy way to support the hospital is to donate blood. They have a new donation facility and the staff is very friendly. For anyone who wants to donate blood, call the Blood Donor Center - 323-361-2441 to schedule an appointment. If anyone has any other kinds of CHLA questions, have them call me at 323-361-5431." Bonnie was very helpful during our stay at the hospital. Tell her you are a friend of Joseph and that will make you an automatic friend of Bonnie. She is an amazingly kind and dedicated person and a true ambassador for the hospital.

I will write again early next week and post some more pictures. Joseph has a doctor's appointment on Monday and I will let you know how that goes. He still has a few more hurdles to get over but he is well on his way to full health. That is an accomplishment we can all be proud of.

God Bless,

Kenny Lund

There's no place like home

Tonight we sat as a family and watched a little bit of the Dodger game. We were all there--even Baily the dog. It was our first time all together at home in one room. It was great. We had forgotten how wonderful moments like that are. A nice boring evening is sometimes the best evening there could be.

Joseph is feeding very well and sleeps OK at night. He saw his pediatrician today and everything checked out. He needed a follow-up blood test and after two tries Mary took him home. He has had enough of that. We will get that another day. Now is the time to grow and to continue to heal. Here is a picture of his first bath at home. It is amazing how good the scar on his chest looks.

The girls are being very good about holding him. They have to work so hard to contain their excitement. Here is Megan holding him:

They love their brother so much even though several months ago they all wanted another sister because according to them, "boys are gross." Their Auntie Ann is in town to help out. She is a pediatric nurse and has been areal help through all of this. She has been so great that we even let her hold him:

Every day now we count our blessings and ask God to bless this wonderful community brought together by a special little kid named Joseph. It is one of several miracles that have happened over the last 5 weeks. Keep the faith.

Love,

The Lund family

p.s. The next update will be Thursday night. We will include some info on Children's Hospital and ways to be involved, in that post.

JOSEPH IS HOME!

Yes you read that correctly. We can use the word "home" now because he is actually at home. They surprised Mary on Sunday morning and told her she could take her son home. What great news. On Friday they moved Joseph up to the sixth floor. This was great because it meant that Joseph was doing well. But it was tough on us because it meant we had to have someone with him 24 hours a day. Poor Mary had to pull night duty because they started allowing her to nurse Joseph. So it was really music to her ears that she could go home and not have to sleep in the "hospital barkalounger." Clare was able to tell her sisters that her brother was coming home. You could hear the screams of joy all the way to the Arizona border. Here he is in his car seat ready to go:We said goodbye to the sixth floor but we had to stop on the third floor to say goodbye to the great staff there. Here are of few of his AWESOME nurses:
They took our picture---don't we look happy?


Steve and Christina helped us get the last minute things ready for the homecoming. The girls were so excited they could almost fly! Up the driveway came the car and there was Joseph and mom!! More shrieks! Who would hold him first? Who could change him first? (yes they actually argue over who gets to change him) Who gets to feed him? Hold on girls---form a line. We will all get a chance.

We are finally---five weeks to the day of his birth and less than two weeks after open heart surgery---all together at home. Life is wonderful and we sings songs of praise. We thank God for his blessings and our family and friends for getting us through this. We could not have done it without you. Our miracle boy is home and all is well.

This next week I will post pictures of his life at home. Unfortunately, Joseph has to stay at home and hunker down. He is not yet up to his birth weight and he has some growing to do. He systems are recovering and he cannot get sick. We are going to be protective for awhile. But we promise to post many pictures.

Here are a few to start:
Clare, the proud big sister, gets to hold her little brother at home and she does not have to wear that yellow gown!

Time to start playing baseball. He will be out on the field soon! Thanks Paul for the cool baseball stuff!

God bless you all,

Kenny and Mary

Going to Disneyland

Today was a very good day for Joseph. He is eating better after hitting a plateau at 30cc's. He can now go up from there. His numbers are all good and the cardiologists have taken him off one more medicine. He is doing so well that when the doctors were on rounds tonight I said I was looking forward to him being at h___ (rhymes with Rome.) The nurses and a few of the doctors said to me don't say they "H" word out loud. It is bad luck . It is kind of like packing up the gear in baseball before the game is over. It will guarantee a loss. Instead of saying the "H" word they all say "Disneyland." So, if an infant is close to being discharged they all say "oh how nice---he is going to Disneyland." Well hopefully in several more days we can take Joseph to Disneyland!

Several times over the last few says Joseph has smiled. I have been trying to capture that smile with the camera to no avail. Here is the closest I have come so far:

That is Clare holding Joseph. On Wednesday we packed up the kids and took all of them down to the hospital to see their brother. Joseph went from the crib and into each of the girls eager arms. Not once during the visit did he wake up! Unbelievable! But they were pleased as could be to be there with Joseph. Here are a few more pics of the encounter:

I look forward to reporting to you that we are all safe and sound at Disneyland.

Peace,

Kenny and Mary

p.s. Please remember the other infants in the NICU in your prayers. There are a few that really need the help.

Happy One Month Birthday Joseph!

Wednesday at 10:38AM will mark one full month since the birth of Joseph Edward Lund. It has been an amazing month. Joseph has new nasal passageways, an improved heart, and more well wishers than can be counted----so please, no gifts! He is one really fortunate little boy.

I find it hard to believe that he is one month old---and yet, the day of his birth seems so long ago. This journey has been a most amazing one and though it has been very difficult at times, Mary and I have had a front row seat to small miracles, large miracles, incredible acts of love and kindness, sacrifice, surgical skill, compassionate care, the bridging of faith, and the tremendous healing power of prayer. We have learned so much and it has given us new perspective on the world. I was talking to a father who had gone through a similar experience several years ago. He said that he was forever changed by his journey. We are forever changed by ours. The change is not a bad change at all but I certainly would not wish the situation on anyone.

Today Joseph continued to get better. He is up to 30cc's of milk at feeding. This puts him more than 1/3 of the way to full feeds. He was more fussy today indicating that he is getting to be more like a typical baby. He was awake more in the evening and asleep more during the day. WE HAVE TO GET THAT TURNED AROUND BEFORE HE COMES HOME! We are missing enough sleep as it is. He has been able to stay in the NICU because they are out of bed space on "the floor." That is fine with us but we know the move will be soon. The doctors are happy with his progress but there is not a firm date that he can come home.

Here are a few pictures from today:

Sorry but there are no pictures today of him with his eyes open.

Joseph is one month old and we say a prayer of thanks for this miracle baby and all the family and friends we can share our joy with. Have a great day today!

Peace,

Kenny and Mary

More Progress

Today they began to talk more about Joseph's move. He may go to the 6th floor or even back to Glendale Adventist Hospital. It all depends on how many beds they have. It is a good sign because they think he is strong enough to graduate from the NICU. We were hoping he would stay in the NICU until he goes home but that looks unlikely at this point. We will deal with that when we know for sure. Today Cardiology visited him. They took out the leads for the pacemaker so he is down to an IV and a PICC line. They are doing a few more tests but hopefully they will consider his heart "good to go." The surgeon said that would mean he could be going home soon! He feeding increased and can take his medication by mouth now. That does not seem possible considering where he was just 7 days ago. His recovery is happening too fast for us to comprehend.

Elizabeth had her first day of school and her Auntie Cindy picked her up and brought her to the hospital. They let her feed Joseph. The other girls are thoroughly green with envy but they will get their chance soon enough.

I wish I could write more but I am trying to catch up on sleep in anticipation of his homecoming. Hopefully there will be more time tomorrow.

God Bless,

Kenny

Another Great Day!

Joseph hit some more milestones but I think this quick story says it best. Christina, my younger sister, has been helping watch Joseph at the hospital so Mary and I can spend some time with the other kids at their events. She saw him Saturday morning and then again today. She walked in to his room. By the way, his room has changed. Joseph was in a private room but now he is in a larger room with up to six infants in it. (I like to think that he moved to a much larger private room and he just has a bunch of friends over) But it was the same room as Saturday although they had moved a few kids around. Christina walked up to Joseph's bed and saw such a change from Saturday that she looked around to make sure she was in the right place and even checked his name tag on the crib. It was Joseph alright. He has really changed and looks so much better. This is him sleeping today:
I think you can see why Christina did a double take. He looks like a a happy little baby just ready to go home! Going home will still take awhile as he must be able to tolerate "full feeds" (as the nurses say) That is about 75 cc's every three hours. Today he went from 3 cc's to 10 cc's. Hey---it's a start!
It was very nice to attend mass at Saints Felicitas and Perpetua Church today. They prayed for "baby Joseph" and many people came up to say they had seen the blog. I am constantly amazed at how many people read the ramblings of a grateful father. I am pleased to be able to share this journey and to have you walking along with us. It has made all the difference.

Peace,

Kenny

Go Team!

It has been a day of success for several teams. We were able to watch our daughters play soccer and all three teams did well. The Dodgers beat the Giants and that always makes us happy. However, the most important team victory today occurred today in the NICU. Joseph had his breathing tube removed!!! Here are the before and after pictures

I think you will agree that the second picture is much better. He still has a nasal cannula just to provide moisture. He is completely breathing on his own. Mary and I kept commenting on what a difference this is compared to one week ago. Last Saturday we were looking at emergency heart surgery. Now we are amazed at how fast he is recovering and are looking forward to the day he will be coming home. It is a TREMENDOUS SUCCESS for his team. His team is made up of doctors, nurses, technicians, respiratory therapists, family, friends, priests, sisters, people who did not even know him but prayed for him just because someone asked, saints, and parents. It is a team effort and we are winning!

The next step is feeding. They may start him tonight with very small feedings to get his stomach working again. He has shown such resilience that his doctors have high expectations to get him up to full speed over they next several days.

It is a great day and we give thanks to God for this success.

God Bless,

Kenny and Mary

Moving day

This morning Joseph was moved from the CT-ICU back to the NICU. That was done because he is doing very well and because the CT-ICU is packed and in need of bed space. However, he did not move with all the technology surrounding him and that is a good thing. In the last 36 hours he has had his chest tubes removed, his central line removed, he was taken off of the pace maker, taken off sedation and heart medications, his arterial line was removed, and his oxygen setting was lowered. It reminded me of Pinocchio losing all his strings and becoming a real boy. He is operating more on his own and doing a good job of it. He still has some issues with his lungs operating fully but they tell us this is common after the surgery and he will be up to speed soon. It will really be a great day today if they can remove his breathing tube. That should happen later today but may be done tomorrow.
Mary and I are doing better as Joseph does better. The girls are in school and soccer begins tomorrow. It is almost beginning to feel normal again. We still have a ways to go but it will nice to be out watching the kids play on the soccer field tomorrow. I can imagine 5 years into the future when Joseph will join the throngs of kids out running around and having fun kicking the ball. It is comforting to have those thoughts instead of the others that have been bouncing around in my head. The "what if" game is a cruel one that parents go through when their kids are in the hospital facing surgery. I have talked to many of the parents in similar or much tougher circumstances in the hospital. There is a unique bond of understanding as you help each other stay hopeful and positive because it is so easy to slip into despair. Again, I am brought to the realization of how important you all have been to us through this. You shielded us from the darkness of despair.
I hope to bring you more good news tomorrow. Thank you for your interest and prayers.

Peace,

Kenny and Mary
p.s. I do not have the camera with me so I will post a picture later.

A very good day

I walked into Joseph's room tonight and the nurse asked "How are you doing?" My response was "How is Joseph doing?" I explained that if Joseph was doing well then I was doing well. The good news is we are both doing well.

Joseph has less medications, less pacemaker support, less breathing support and his fluid output is excellent. This is all leading to when he can operate entirely on his own. But the big event today takes a little explaining. Let me back up to before his surgery. The doctor met with us to explain the risks and benefits of surgery and what to expect after. One of the things really caught our attention. There was the possibility that he may come out of surgery with his chest still open. WHAT????? I remember thinking-- but I think I said it out loud too. I had heard of this from the NICU but I thought it was only in extreme cases. The surgeon explained that it is very common in infants and it is a normal procedure. But do not worry they said, "there is a plastic cover over the chest so you really can't see it much." There are three main reasons they keep the chest open: 1. to allow the heart to swell and give it room, 2. to allow easy access should there be some bleeding and 3. to allow easy access to keep the heart pumping should his heart have trouble beating. The surgery was done and Joseph did in deed come back with his chest open. However, the plastic cover was what looked like a simple piece of yellow saran wrap across his whole chest. You could see into his chest and it moved with every beat. I waited for everyone to panic because clearly they had made a mistake! The surgery was incomplete. But no one moved. They were as calm as could be. This was a "normal" occurrence in the world of the CT-ICU. It took me awhile to get used to this view. Then I would look away and when I looked back ---there it was again! I had to get used to it all over. It was the most amazing thing I have ever seen. I have a really good picture of it but for obvious reason will not post it here. Jump forward to today. He is doing well and they closed his chest. He looks much better! Here is what he looks like with his new scar. Hopefully it can be a badge of honor for him throughout his life. Sorry if this is a little much to show with all the stuff all over him but all that will be removed over the next few days. There is a handsome young lad under all that and it is so great to see him with his eyes open again!

We somehow got the impression that Joseph would be in the hospital 4 weeks after surgery. We were told today that we could expect to bring him home in 7 to 10 days. His numbers are good and they expect a full recovery. (I think they are getting tired of me making them repeat things like that--but it just sounds so good)

There is a group in the hospital called Spiritual Care Services. The hospital provides them office space and they have their own training program. A minister on staff put this prayer card on Joseph's bed a few days after we arrived a the hospital. It is the Sacred Heart of Mary. It shows Mary with her heart on her chest. Little did we know that Joseph's heart would be exposed as well. It is interesting how a small prayer card can be so comforting as a reminder of the prayers that were surrounding Joseph. The Spiritual Care Services are partially funded by the hospital and partly through a group called the "Spiritual Care Guild." (one of about thirty guilds that support various parts of the hospital) Three years ago we joined that Guild and we are proud to be members. We have seen first hand how important it is to help a family spiritually as well as medically. We are fortunate to have all of you supporting us this way but so many families at Children's Hospital are not that lucky. If anyone is interested in joining this guild please let us know and we will get you the information. It is a fun group and they have fun events. The last one was at the Magic Castle.

It is late so I will close. Once again--Thank you all so much.

God Bless,

Kenny

Joseph is recovering well

I have a few minutes so I am trying to keep this up to date. I am amazed at how many people are reading this blog and the notes and comments are great to read. This blog site is very basic so I am sorry I cannot respond to the comments. A few have asked how to send a note outside the blog so it is not public. Feel free to send a note to kenny.lund@allenlund.com or to mary.lund@allenlund.com. 7 years ago when Katherine had surgery, several people sent emails to her to be read when she got older. If you would like to send a note to Joseph for the future please send it to my email address. I have already saved all the comments for him and his scrap book will be quite extensive. He will have reminders for the rest of his life of how fortunate he is and the ordeal he endured.

Currently he is sedated and doing well. He had an issue this morning with his breathing but the doctors assured us that it is normal and they can control it. Here is a picture of the technology supporting him. The goal is to slowly take him off all the support over the next week. That is his little head there in the middle. The use of technology in the CT-ICU is mind-bending. One of the doctors on call actually came into the room as a robot controlled from his home. That way he could check up on Joseph any time needed. It is so new I was not allowed to take a picture of it. he is in good hands. When Joseph first was sent down to the CT-ICU I stopped to read the Mission Statement posted on the front entrance. Here is what it reads:

I was so happy that they included the "Spiritually Supportive" line. I really knew that we were at the right place. More later....

Kenny

Humbled

Joseph is not completely out of the woods, but he is doing very well. His numbers are great, his surgery was successful, the doctors are happy and the parents are humbled. We could never adequately give an appropriate thank you for all you have done to support Joseph and our family. There are too many things people have done to count and there are things that were done that we still do not even know about. We are not even sure of everything that happened in the last four days that we did see. It is such an amazing journey and not one time did we every feel alone. I wish you all could have been there to hear the surgeon give us the good news. It was as if hundred pound weights had been lifted. We were so excited and so relieved to be on the other side of the surgery. We will try to write over the next few days to explain some of what went on. But for now we just have time to say THANK YOU THANK YOU THANK YOU! God is good, and kind, and merciful and He has worked through you to help us get to this point. We are happy to be here and we are truly humbled by all you have done. Thank God and thank you and thank God for you!

God Bless,

Kenny and Mary and Baby Joseph

p.s. I will get some pictures posted tonight--somehow
and thank you Molly for doing the updates while we were in the waiting room

The doctor's report is in...Joseph is doing great!

The doctors just visited with Mary and Kenny. They were happy to report that the surgery went well and that Joseph did great! The two holes have been repaired and the problem with the aorta was less extensive than expected. The doctors were able to do the preferred procedure for the aorta repair and thus were pleased. Kenny shared, "I made the doctor repeat the good news three times!" Interestingly enough, Joesph's heart is the size of a walnut. We discussed how lucky Joseph was to have such a talented team of doctors and nurses working on him. Mary and Kenny will get a quick glimpse of Joseph as he passes through to recovery. More to follow.

The heart repair is complete!

Joseph's heart repair is complete and he has been removed from the heart and lung machine. The doctor's are now closing him up, which should take at least another 30 minutes. Joseph will then be moved to recovery for approximately an hour. Once he completes the recovery period, he will be moved back to the Cardio Thoracic ICU, at which time Mary and Kenny will be able to see him. More to follow.

The operation is now in progress.

Joseph's heart surgery began at 9:00 am this morning. The operation should last a total of three hours. The doctor's say that they will not provide many updates while the surgery takes place. However, they did send word at 10:00 that things were moving forward as planned. More news to follow as the procedure continues.

Surgery has been delayed 1 hour

Joseph's surgery has been pushed back to 9:00 a.m. this morning. He is doing great and all of his statistics are very strong.

Surgery is Monday at 8AM

The schedule is set. Joseph's heart surgery we have hoped for and dreaded is set for Monday morning at 8AM. It should last three hours with at least one hour for recovery. The surgery that once seemed to be so far away now feels too close. As parents, we are not ready to deal with tomorrow, but we welcome the repair of Joseph's heart. We will get through tomorrow with God's Grace and the help of the community that has rallied to support our family. Thank you for your continued support!

God Bless,

Kenny and Mary

Long days journey into night

The last twenty four hours have been the longest on record. I know that mathematically every twenty four hour period is the same, but any parent who has had a child in the hospital knows what I mean. The good news is that Joseph had a miraculous turn-a-round. He has stabilized and is in much better condition to go into surgery. Mary and I have been able to come home to regroup and catch our breath.
Last night at 7PM Joseph was transferred to the Cardio-Thoracic ICU. It is an amazing unit. They changed some of his meds and took some extreme measures. He did not respond immediately and Joseph was being set up for emergency heart surgery for this morning. His blood pressure had dropped and he was to the point that his kidneys were beginning to fail. We stayed at the hospital all night and got a little sleep at about 1am. We woke up at 5am and we were expecting more bad news. What we heard instead was that he had responded to the treatment and his kidneys had better function. He even had his eyes open and he looked dramatically better.
Joseph is not out of the woods yet, but he is in much better condition to tolerate the surgery that will be done on Monday or Tuesday. We will try to update this site as soon as we know when the surgery will be.
On the spiritual front I can tell you that we have had our struggles. The unit allowed Fr. Matt to come in to see us last night. He helped bridge our faith and after he left at about midnight thirty, he went back to the St. Francis Chapel and said a mass for Joseph. This coincided with Joseph's medical turn-a-round. Several times Mary and I have felt strong feelings of peace, even at the most difficult times. The power of prayer is getting us through. Thank you for your continued spiritual support.
God Bless,

Kenny and Mary.

Quick update

Joseph has everyone's attention in the NICU. He is watched closely. One of the NICU doctors did not like the blood pressure numbers and it still was puzzling as to why his heart condition became so problematic so quickly. He asked that they run another test. They found an additional problem in his aorta. It is a narrowing called "Coartation." This narrowing is making his heart condition that much worse. It is fixable and they will correct it at the same time they fix the rest of his heart. Things made more sense and they adjusted his medications accordingly. This helped him stabilize more but he is still in a very serious condition. They are going to transfer him to the Cardio-Thorasic ICU tonight to help prepare him for surgery. At this point he will have surgery Monday or Tuesday.

Kenny and Mary

A turn for the worse

This is a hard update to write.

Thursday seemed just fine for Joseph. Mary, Ann and Sue spent all day with him and he was alert and at times even smiled. I held him until about midnight and when I left he was OK. He had thrown up a little bit but it was not a huge concern. Friday morning was a different story. He was laboring to breathe, had thrown up some more and when the cardiologist examined him he was showing signs that his heart condition was deteriorating rapidly. Up to now, I have not written much about his heart. By all indications we had more time. We were planning on easing into this point. Joseph's heart is on its own schedule.

Joseph was born with two holes in his heart. A large hole between the ventricle chambers (a VSD) and a moderate hole between the atrial chambers (an ASD) This causes the blood to recirculate through the heart and lungs more and less blood gets out to the body. To complicate things further he has a deviation that causes the outflow to be constricted. This would normally not be a problem but it makes the holes more problematic. It is not surprising to the doctors to be at this point, but it is surprising that we are at this point right now. Instead of easing him into surgery he is being stabilized to make it to surgery. The surgery will probably be on Tuesday but they could do it any time on an emergency basis.

Yesterday was a really horrible day---and yet it was inspiring as well. The shock of each update was tempered with the realization that Joseph is in the best place possible, with the best doctors, and so many people praying for him. The doctors are concerned but not alarmed. They are reacting to Joseph and are setting the plan according to what he needs. The entire cardiology department is informed and aware of Joseph and they are ready to correct his heart condition. Now we just have to wait and see where Joseph takes us. Currently, Joseph is heavily sedated and carefully watched. Time will move very slowly this weekend as they work to get him to Tuesday. He could use a few more prayers. By the notes and messages we have received we know he is being surrounded with prayer. Heaven is being bombarded with requests for the health of Joseph. There are masses and prayers being said by the Holy Cross Fathers, the Franciscans, the Carmelites, the Dominicans, the Sisters of Saint Joseph, the Jesuits, several parishes, and a cloistered nun in the Midwest. There are individuals and families across the United States praying. This is what will carry him and sustain our family. As you pray please remember to mention the other babies in the NICU. There are about 50 babies in the almost always full third floor wing. Several do not have families and could use the extra boost of prayer.
Joseph still has a good prognosis and we are hopeful of a full recovery. I focus on that when it seems like this path is not leading anywhere. I am sure there are more surprises along the way and it is a path I would rather not go down. But go we must. Thanks to you--we are not alone.

God Bless you,

Kenny and Mary

Moving On

Sorry it has been awhile since I have written. So much has gone on. We are half way through our move and after a few days of going sideways, Joseph is moving forward. It took many adjustments but Joseph is doing much better. When he does better---his parent do better. Let me back up to a turning point on Tuesday.

On Tuesday evening I was ready to just unhook his tubes and take him home. The frustration of not seeing improvement and the lack of clarity as to why he was not improving, was getting to be overwhelming. Also, by Tuesday evening, it was clear that he was not coming home for at least a week. His electrolytes were still out of whack, he was still breathing rapidly and his heart rate was elevated. On the monitor above his bed it gives a constant read out of his heart rate, respiration rate, blood pressure, oxygen saturation and carbon dioxide level. Being a techie person, I have become obsessed with watching his "numbers." The doctors who only see him in short spurts during the day look closely at his lab reports and his charts. The nurses are the ones who constantly say "don't always look at the numbers---Look at the baby!" They are trained to look first at the baby when an alarm goes off. It is the nurses (and Mary) who pointed out that since Sunday Joseph looks better. And that is true---Joseph looks better. The system at Children's is set up so that the nurses have a strong input in the care and decision making regarding Joseph. There are three doctors during the day who consult and discuss with the nurses regarding the children in the NICU. It is interesting to watch. The nurses are on duty for 12 1/2 hours and they see the trends and often have the best information on the baby. The doctors write up the orders but it is almost always the nurses who carry out the orders. They see how the babies react to medicines and treatment. Don't get me wrong -- the doctors are great---but they are great doctors in part, because they listen to the nurses, parents, respiratory therapists and other caregivers.

On Tuesday evening it was the nurses who said "enough." The doctors agreed. The parents, after having it explained three times, agreed. (OK OK--Mary once and me three times) Time to make things easier on Joseph. They would put in what is called a "PICC" line. A PICC line is a more recent development using a line which is inserted into one of the large veins in the arm (usually near the bend of the elbow) from where it is threaded into the superior vena cava. (it goes through the arm and up towards the chest) The initials PICC stand for peripherally inserted central catheter. This is necessary because the heart medications were making it nearly impossible to put in standard IVs. The IV on Tuesday afternoon took four tries. An IV on an infant only lasts a few days at best, but a PICC line can last a month or more. The PICC line was put in Late Tuesday evening and since then Joseph has steadily improved. The PICC line lets them put in more nourishment to help him grow and to balance his numbers. He is currently getting two types of nourishment through the PICC line and Mary's milk through an OG tube. This combination is letting him gain the weight he needs for surgery. When I saw Joseph Wednesday evening he looked much better and all his numbers had improved. After being fussy like a regular baby and after a diaper change he fell soundly asleep in my arms. A small slice of heaven for a frazzled dad.

Where do we go from here? We did get word yesterday that his heart condition is getting worse sooner than expected. It is increasingly looking like he will not come home before he has heart surgery. We hope to get some news on this shortly. The time is coming to start gearing up for that surgery. We are not ready for that yet but with all the support and prayers and love that is surrounding our family, we will be.
Peace
Kenny

p.s. I know I promised pictures but they are on the computer that is packed away. Tomorrow for sure.

An OK Day

Monday was just OK. Nothing great and nothing real bad. They are still trying to find the right balance for his electrolytes. It is getting better. His blood count dropped a little so he received some blood to boost his count. I had donated blood in case he needed any during surgery. His surgery went well and he did not need any blood so mine was still available. Now he has 60cc's of my blood pumping through his body. I think his IQ went up 10 points after the transfusion! When I visited him last night he was working on geometry. (ok--that is not that funny but I am tired and it made me laugh) I forgot the camera when I visited him last night so I do not have a new picture of him yet. We will get a picture today.
The doctors are hinting at him going home before the heart surgery. When he goes home we will have him in hiding. Joseph will not be able to have visitors and we cannot take him out of the house. (I can almost hear the collective groan) We have to monitor him on a constant basis. They told Mary in the training that you have to be able to get to him within 10 seconds or the alarm goes off. Talk about nervous parents!
Due to our pending construction we are moving out this week and into my parents home. This way Joseph does not have to be moved twice. I really want to thank my mom, Mary's mom and our sisters who have been helping get everything ready for the move. Once again this is proving to be quite an adventure.
peace

Kenny

Two Steps Forward One Step Back

The good news is they were able to remove all the tubes that assist him with his breathing. He is fully breathing on his own. However, Sunday was not Joseph's best day. Just when he was making great progress he went backwards. It was very frustrating. The heart medications are mixing up his system and making it hard to find a balance for his electrolytes. Joseph began having "emesis." That is the fancy medical term for barfing. He has to work hard to eat and then all that energy is wasted in a few seconds time. They put an oral feeding tube back in and are feeding him slowly through that. So, he lost one tube and gained another.

They worked all day with him to get him balanced. He lost weight and looks more frail. We are going to have to get used to this. His heart medication keeps his fluid levels down to make it easier for his heart to pump. As we understand it, he may be getting stronger but looking weaker. We still do not know when he will have heart surgery. Please keep the prayers up for him. He really needs strength and a fighting spirit. This leads to the picture of the day. When Joseph first got into Children's he was visited by two wonderful Carmelite Sisters. The Carmelite order has been praying for him since before he was born. Saint Joseph is the "protector" of the Carmelites so there is a strong connection. On the left is Sister Mary Joseph and on the right is Sister Madonna Joseph. So there are three Josephs in this photo. With friends like that we are sustained on the bad days and look forward to better days ahead.
With gratitude,
Kenny