surgery went well

Joseph is out of surgery and it went well. He has new larger nasal tubes and is breathing through them like a champ.

Nasal Tubes--The New Fashion Statement!

Joseph will once again be a trendsetter and will soon be sporting new, larger, classic, and aero-dynamic NASAL TUBES! Yes, they are coming back in style after just a few weeks. They will be installed on Wednesday morning. Look for Joseph on the cover of Gerber Weekly and Fashon Babies. All the kids will want them his summer!

OK seriously now-----

Joseph will have his fifth surgery this Wednesday. He cannot get enough air in through his nose and babies need some air in order to feed properly and to thrive. We have tried all the tricks but it is very frustrating to feed him and he tries so hard that he burns about as many calories when eating as he is taking in. This does not let him eat properly and he has lost some weight.

The surgeon will open up his nasal passageways and then will put the reliable tubes back in place. They will be in for about 3 months before this set is retired. If the surgeon can get the passagways open up some more and if the tubes allow him to eat well and thrive then he should be in good shape when they are taken out. In this video clip you can hear his nasal breathing right at the beginning:

It is just not good enough airflow to get by. You can also see how happy he is. With everything he has been through he remains happy and he is very good natured. He still sleeps through the night and overall he is doing well. He just needs to breathe better!

Joseph jabbers all the time but for the record he nows says DADA regularly(well once to be exact.) Never mind that I say it to him a thousand times a day-- He still said DADA and this video proves it:

Joseph will be in the hospital over-night this time. It is a tougher surgery so they want to observe him longer after surgery. It will be a long week but we will get through it! Thanks for keeping the faith. Since I owe a few pictures I am going to close this blog with several of them. Enjoy, and keep us in your prayers--you continue to be in ours.

Kenny

Still a journey

Today February 12, Joseph is six months old. His half birthday. It has been an amazing journey and it will continue on for quite some time. I remember when he was about 4 weeks old and he was still in the hospital. Some friends asked us when they could see him and I replied, "not until at least 2008." They were shocked because it had not really sunk in how we would have to keep him out of circulation. It kind of shocked me too. Maybe we are over protective but until we hear one of the doctors say, "they surgery went much better than expected." we are going to stay a little gun shy. I think that not hearing that line has been our biggest frustration. Each surgery has been a step forward but not the leap forward we hope for. This last surgery has proven to be the same. It is progress but now there are other issues.
Joseph is having a tough time breathing out his tube free nose. It is hard for him to eat and sleep so he is a bit less happy and we are a bit more frustrated with the effort it takes for him to feed. He has to stop and start constantly to catch his breath. Watching him eat actually makes us breath harder as we try to will more air into him. We saw the doctor on the 11th and he gave us a few more tricks to try to help Joseph tough it out. If it gets worse or if Joseph starts losing weight, he will go back in surgery to have new tubes put back in. That will allow him to eat better, but it will mean an additional surgery to remove them once again. Each surgery is tough on him and tough on us. (But they tell us that the tenth surgery is free--as long as we have our card punched!)
I learned to like the tubes that Joseph had for 5 1/2 months. They were easy to keep clear and he tolerated them very well. But I was so glad to see them go. Now we are facing the prospect of having them return. That is not our goal. We are going to do all we can to keep him tube free. So we ask you once again to keep him in your prayers. This child has taught us so much. He has also confused us so throughly at times. I have a few questions for God that I hope will be answered some day--but for now we are content to continue the journey with all of you walking along with us.
HAPPY HALF BIRTHDAY JOSEPH!
Someday he will read that and know how he has been loved from the start.

In gratitude,

Kenny

p.s. Come back soon and I will have some more pictures

Resting at Home

It has been a long day. We left home at 5:30AM and returned at 2:30PM. The surgery went fine but we had a little scare during post-op when Joseph's heart rate stayed elevated. It took longer than expected before we could go home. It turned out that he had become dehydrated and that was causing his heart to pump faster than it should. Once they got some fluids in him he was fine and we were given the OK to head out. However, for a short time we were reminded what it was like back when Joseph was in the ICU. It was a memory better left unstirred. There was also a good side to it. When things were once again out of control we relied on the thoughts and prayers of Joseph's community. Friends and family inside and outside of the hospital rallied to Joseph's aid and he responded well to the support.

Several of the staff at Childrens Hospital remembered us from our previous visits to the surgical unit. I remember thinking that it was both a good and a bad thing. It is nice to have friends there but it is not a place we want to hear phrases like, "oh--back so soon" or "one more visit and you get a free toaster!"

Doctor Geller was happy with how the surgery went and it was great to see his smiling face after the surgery. There will be follow up visits and maybe even a surgery or two to keep Joseph's nasal passageways open and functioning at 100% but for now he is good to go. It is interesting to see his face without tubes. Here are the before and after pictures hot off the presses:

As you can see he looks better. For us, it takes a little getting used to.

So we end the day having one more surgery behind us. In all likelihood Joseph has more time to spend at Childrens Hospital---but for now he is resting comfortably and and we can all take a collective sigh of relief and offer a prayer of thanksgiving. Tomorrow will be a wonderful day!

Kenny

out of surgery

All is well but Joseph is not very happy. We will be able to go home at 12:30

The surgery is on

It is 10:30PM and I just put Joseph in his crib. He got an extra feeding tonight because he will not be able to eat until after the surgery. He is first up and we report to the Hospital at 5:30AM to get him ready for his 7AM surgery. The surgery should be about 35 minutes. It is a little longer than we thought at first because they really want to check his nasal passageways to make sure the openings are good. Joseph's ENT surgeon is the best possible. Not only did he do the surgery to put the tubes in Joseph, but he also did the surgery for Megan to fix the same problem for her. The difference for Megan was that she only had one side affected so she did not need surgery until she was five. The surgeon, Dr. Kenneth Geller, has become very important to our family and we could never thank him enough for care he has given to our children. He has dedicated his life to treating children and he is teaching the next generation of doctors. They have the best teacher possible.
We have had our share of surgeries with Joseph. This will be his fourth time under general anesthesia. I still think that anytime your child goes under anesthesia they should put the parents under as well. Then you can all wake up at the same time---much less worry and grey hair in the process. I just don't think we can get our insurance to cover it---They have done enough already.
I promise to update the blog after the surgery. It will be a short note because I will write it using my cell phone. I am not as good at the small keyboard as the teenagers are with all their text messaging. I will write a longer blog in the evening when we are all back home. Thanks for visiting this blog. God Bless.

Kenny

Doing well and getting ready

Joseph is doing well and continues to grow. He can roll over back to front and front to back. He continues to be happy and except for knocking his bouncy chair over he has not had any setbacks.
It is now time to prepare for his next surgery. If all goes as planned he will have surgery on January 29. Compared to the other surgeries, this should be a snap. But, anytime he goes under anesthesia there is always that lingering fear. He will have surgery next week to remove the tubes in his nose that have allowed him to breathe. He is old enough to know that if his nasal passageways get blocked that he can open his mouth to keep breathing. It will be strange to see him without his tubes (or as I call them, his "nostril extenders") He has had them since he was less than a week old. His lungs are stronger and have more capacity so they whistle a bit when he breathes now. His sound will be less familiar.
We need to keep him from getting a cold before his surgery so we will tighten up his exposure to the world one more time. We do look forward to the day when we can take him and the entire family to a public area like church, school or even a restaurant. But what we look forward to most is taking him to see all the great people who have been pulling for him and praying for him. Until that time I will keep posting pictures and video clips. Here one that lets you see more of him than ever before!


Please keep Joseph and his doctors in your prayers. We will continue to keep you in our prayers.

Kenny and family

A Good Visit to the Cardiologist

The visit to the doctor's office went very well. Joseph was a champ during the echo-cardiogram. This test takes a little while and he has to hold still. Not an easy thing for a five month old. Yes, Joseph will be five months old on January 12. This is a great milestone and we find it hard to believe he is that old already! He is right where he should be with his development. Joseph is alert, jabbers constantly, is beginning to roll over, laughs, and grasps objects put in front of him. The cardiologist was very happy with how he looks. His exact words were, "He looks terrific!" The big surprise was that he told us not to come back for three months. We took this as a huge positive. Joseph still has a narrowed aorta but his blood flow is good enough to keep him out of the cardiologists office for three months. Hooray!!! God is good.

Happy in San Diego,

Kenny

Happy New Year

It has been a great start to the new year. Joseph is doing well. He has passed the 17 pound mark and does not show any signs that his heart is having trouble. He loves to smile and even lets out some giggles. However, this will be a tough week as I head down to San Diego for our annual managers meeting. Mary's sister Cindy is coming up from San Diego to help Mary out with all that goes each and every day. With five children to look after, there is a tremendous amount to accomplish. Mary handles it all very well. Luckily I married well!
Life is pretty good at this point, but just so that you know we are a normal everyday family I want to tell you what happened on Christmas Day. I must first preface it with --Overall it was a great day and there are no long term effects from the ordeal.
Christmas morning was a blast with the kids opening up their presents and we had a nice breakfast. Late in the morning Joseph was put on the bed and we (two of the girls and myself) were distracted by the new IPOD that the four girls received from Santa with a note about sharing. (yes--one IPOD for four girls) Well, Joseph picked that moments to roll over for the first time and he went right off the bed and when gravity took over he ended wedged between the night stand and the bed. He also hit his head. Well chaos entered the room. Joseph was screaming, Mary was trying to get to Joseph, the other girls ran in and started crying in unison with the two who were already crying. Mary and I quickly assessed Joseph as one of the girls asked if she should go call 911. "NO" we yelled in unison, "just get the icy bear---he is OK" It took a decent amount of time to get everyone calmed down. At about the five minute mark Joseph smiled at his mom and acted like nothing ever happened. The girls however, were traumatized for a few more hours. Looking back at it now it seems pretty funny and it was a good lesson for us all. Here is a little video clip to prove that he is OK.


Joseph goes to the Cardiologist on Tuesday, January 8. He is scheduled to have an echo-cardiogram to asses how well his aorta is doing. I will let you know the outcome as soon as I am able.
Happy New Year and may 2008 be a year of miracles and wonderful events.

Kenny

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.