A Better Day

Last night I continued my search on hypoplastic left heart syndrome and after reading more about it, it seem to put my mind more at ease. I had a more calm feeling about the ordeal and had a change of thought about how things will turn out. I want to try to look at this in a more positive light. I know that it is going to tough, and I am sure that my thoughts will take another turn at some point, but for now I will try to stay in a good state of mind. We haven't even talked to the pediatric cardiologist or genectics physicians, so who knows exactly what to expect. I do want to thank all of you for your encouraging words and prayers. It really means a lot.

As for Kaden, well he is having a pretty good day. I am not feeling so good, so I am not as fun to play with and daddy is working over time today. Kaden is pretty good at keeping himself entertained, but he definately knows how to get my attenion when he gets bored. We have been working hard at getting him to walk. He is doing extremely well. At school he has to walk around quite a bit...so I think that helps. He requires less and less support each day. He is even getting to a point where he can stand on his own for a moment. He gets a little scared and reaches out which causes him to lose his balance, but he'll get there. Today was kind of funny for me...Kaden has one of those magnetic writing boards and he enjoys having us write words on it. Well, today we went through colors, animals, and he started doing body parts. He points to a body part that he wants us to spell. He started running out of body parts and thought for a moment and then grabbed his armpit. I started laughing and wrote it for him. Well the next thing he grabbed for had me rolling on the floor. He has never been one of those "adventerous" little boys who grabs himself while getting his diaper changed, so it was a total shock when that is exactly what he did. I tried asking him if he wanted me to write diaper, nope that wasn't it. So me being one of those mom's who give it a kiddy name wrote out "pee pee." I was kind of at a loss of words at the time. He accepted it though!!! Well, daddy just called and we are headed to Wal-Mart when he gets home, so I better get Kaden's things together. I figured out my camera, so I will try to post pictures later.

Here's the deal...

I received a lot of phone calls from friends and family yesterday, wanting to know what was going on with Ava. I will try to explain it as best as I can, however, I am not a doctor so hopefully it's pretty accurate. Well, as you may have read in the previous post Ava has been diagnosed with several things, the main thing being hypoplastic left heart syndrome. After reading about it on the internet I have learned that this basically means that there are several abnormalities in the heart and main blood vessels. This happens during pregnancy within the first 8 weeks of development. One of the most dangerous defect of this is that the left ventricle is very underdeveloped. In a healthy heart the left ventricle is normally very strong and muscular so it is able to pump the blood to the body. Being underdeveloped, the body will not be provided enough blood flow. Treatment for this syndrome is either numerous surgeries beginning right after birth up to 18 months or later, the second option being a heart transplant. After reading about things the baby will endure after birth, it takes me back to Kaden's birth and hospital stay. The articles described babies being on the ventilator, numerous IV's, arterial lines, chest tubes, just things that a baby shouldn't have to put through.

That is just one of the many abnormalities the doctor diagnoised Ava with. Another being a complex heart anomaly, suggestive of large Atrioventricular Sepect Defect. This basically means that the heart did not divide into the four chambers a healthy heart has. The doctor also stated that he did not see an aortic arch. What I have found about the aortic arch missing is that there is no way for the body to receive red blood leaving the heart. As you may guess, this is very dangerous. Ava's palates to her skull are not develping right or in other words not fusing together right. Her head is mearsuring bigger and more round than a normal baby at this stage.

I don't understand why this would happen again. I have tried to think of all the reasons and I just can't seem to make sense of it. Don't get me wrong, I would never trade Kaden for another baby, and I am thankful God trusted us enough to put him into our lives. I know and have heard numerous times that God does not give you more than you can handle, which means Nate and I must be stronger than we really think we are. After reading about all the different findings with Ava, I think she is definately going to have to be a miracle baby. I try to have good thoughts, but it is hard. I think she is going to be a really, really sick baby, and after watching Kaden go through all that he has been through and knowing how sick he was (which I think she will be a little more than that), it just doesn't leave you with too much hope. I know that Kaden is a miracle and that miracles happen, that and God is all you can really hold on to.

Another thing that really has been bothering me is what to do when she is born...meaning with her and with Kaden. I have never been away from Kaden for more than a day, but I can't imagine leaving Ava at the hospital on her own. Being that she will be born during cold and flu season and RSV season, it would not be safe to bring Kaden up to KC and risk him getting ill. What do I do? And what if she is in the hospital for a long period of time. I am working full time now, I would quit except that now, unlike before with Kaden, we have more responsibilities. We purchased a lot in hopes of building a house...I have a feeling that is not going to go so well. I know that we will figure it out, but thinking about it all now is very overwhelming. The thing that gets to me the worst is the seperation. I know that I could go down there for a day and then back home for a day...but financially that doesn't seem too realistic. Maybe we should just move to KC : ). That would be the easiest, but Nate might end up in the hospital with high blood pressure issues from all the horrible traffic : ). I know I am rambling , and I know that it will be hard, but we will come up with a solution. Please continue to pray for Ava. Thank you all for all your thoughts and prayers.

It's a Girl!!!, but we need your prayers

Yesterday we found out that Kaden is going to be a big brother to a little sister. However, we also found out some not so good news and had to see a specialist today in Topeka. We were told that she has hypoplastic left heart syndrome, her palates are not forming right in her skull, she is missing a vessel cord in her umbilical cord (which doesn't seem to be that big of a problem right now), she has bilateral pleural effusions, they did not see an aortic arch, and she has a complex heart anomaly suggestive of large AVSD. You might be wondering what all this might mean...well, we aren't too sure right now either. The doctor did talk to us, but when you are in shock, it's hard to follow along. We are going to look all of this up and put it into more understandable language later. We have decided to talk to the genetic physicians to see if it is something related to us, with having Kaden and all.

What they did tell us is that she will have a 50/50 chance for survival in the womb, and that mortality is high after birth. She will have to go through several operations. We plan on going to Children's Mercy again. I don't know how it will work out for us though, now that we have Kaden. When it was just Kaden, I was able to stay up there with him 24/7, well now Kaden will be home and I will want to be with him, but at the same time be at the hospital with her. It will be hard but I am sure we will come up with something. Living two hours away, there is no way driving back and forth will work. I jsut can not believe this is happening again. It gets very frustrating and all you can think is what the first baby went through and hope that it will be easier. The way the doctor talked, I don't think it will be. I hope she is as strong as her brother. God has his plan and we can only go by it. One good thing is that we have already gone through this so it is not new territory. We know the nurses in the NICU and feel relieved knowing that they will be taking care of her.

So.....in case any of you were wondering we are naming her....Ava Rae. Please pray for Ava. Thank you so much and I will be more specific in the next blog, I have to get over this feeling of disbelief first.

Our Day In Kansas City

Today Nate, Kaden and I made a trip to KC to speak at a conference about premature and medically challenged infants and toddlers. I believe every year they invite a family to speak and this year it happened to be us. Kaden was definately the center of attention (not that it was anything new for him). He enjoyed getting the crowd to laugh, he even showed everyone how to dance, I must add he is a FABULOUS dancer. He is not a big fan of an audience clapping, he even cried when he heard it right before we went on...however after the dance he started clapping leading to the audience clapping and he just ate it up. I wish I brought my video camera. He was such a little ham. On the way home Nate and I went over some of things we discussed at the conference. Then he started making fun of me...why you might ask. It is because of all these hormones raging inside of me. We were asked what we were hoping for, for Kaden's future. Ok, so I started crying while I was talking about it...it's allowed, I am a mom!!! When we got back into town we took a trip to Wal-Mart, Kaden was showing us everything he wanted...and I mean everything. I had to let him know that Santa would be here soon and that he needed to talk to him. He did make it out of there with some new bath toys though.

Kaden has learned a new word to spell on his leap frog magnet toy. "Boo." What perfect timing. The other day he put the three letters into their slot and it replied back to him as "boo." All of a sudden I hear him trying to get my attention and when I look over he began pointing at the word and then covered his eyes as if playing peek-a-boo. I am telling you, this boy will find a way to let you know what he is thinking. Nate and I definately love to brag about what a genious we have. Well, anyway...he is showing everyone that he comes in contact with the new word he has learned. Maybe he will teach the new baby somethings.

I know that I have promised this in the past...but one day I will find a way to post pictures again. I have been so busy lately with everything I am finding it hard to keep up with things. One day.....

Please continue your prayers

This post is actually about little Gabi. I have just found it in me to write this to all of you...but Gabi passed away on Monday morning. She put up one heck of a fight. Gabi reminded me so much of Kaden when he was in the hospital. She has left footprints on my heart. Saturday her family is celebrating her heroic life. Please be with them in spirit, and continue to send prayers their way. Rest in peace Gabi...sweet dreams angel. Love The Boeckman Family

Jason and Micah,
Please let us know if there is anything that we can do for you. Our hearts are open to you all.

School Days

Today was Kaden's first day of school. He did wonderful, mommy was a different story. I thought that it would be alright, but once I started to tell him good-bye the tears started flowing. My baby is growing up. His nurse, Cristen, is able to go with him, so I think that helps him a lot. She said he did great and seemed to open up to one of the paras' there. He is one of the helpers, how I understand it he is in charge of shapes. So, he points to a shape and the class says what shape he is pointing to. When I went to pick him up, class was still going on...so I stood outside the classroom and watched him sit in a circle with the rest of the class and sing "The Wheels on the Bus," (I admit, that almost got the tears flowing again). He goes to school four days a week, Mon-Thurs. for three hours, so it's not too bad. He was excited to tell nana what he did today. When he saw her he signed school and numbers. If you didn't know already he loves numbers, colors, and letters! What a big boy...I can't believe this day is already here. Boy was he wiped out tonight, he started asking to go to sleep by 6:30, I made him wait until 8:00, I don't need him up and ready by 4:00 : ). Like the last couple postings I have pics to post, however I am trying to get the camera to work with this computer again...I am not sure what is going on. Hopefully soon.

Our Day at the Lake

Kaden is doing well. He went out to the lake with us for my dad's company picnic yesterday. Lucky for him it was cloudy and breezy most of the day. I think he really enjoyed it. We took him on a boat ride. He didn't do so bad. After awhile I think he began to get fed up with the life jacket. Unfortunately I didn't have a camera to take pics. He got his first sun burn. It's a little pink and across his nose and cheeks. It's not bad at all, but it gave him a little color : ) .

Well, I really wanted to leave a note up here to ask you all to pray hard for Gabi. I just viewed her blog and the doc's aren't sure if she will make it through the night. She had the surgery for the trach on Friday and she just isn't doing very well today. She is holding too much fluid in her body and it's making it hard for her to breath. To me, it is almost what Kaden went through the last time we almost lost him. It breaks my heart and leaves me in tears knowing that this wonderful family we met with such a special little girl is going through something so terrible. So, please pray extra hard for her. Thank you so much, it will mean a lot. Take care...

Go Kaden Go

So Kaden is loving his new truck. He's figured out how to hold on to the gas pedal instead of stopping then going just to stop again. Two days ago daddy had the bright idea to have Kaden drive to grandpa and grandma's house. Kaden did pretty well, mommy had to bend over and steer the truck the whole time b/c daddy decided to ride his bike!!! Kaden only ran over my feet twice, so it wasn't too bad, saying I was wearing flip flops : ) . But boy was he determined to get to grandpa's, it was all pretty cute. Yesterday he took one of his toys for a ride around the block. He is doing really well, I just can't wait for him to learn how to steer!!!
On another note, the family I mentioned earlier still really needs everyone's prayers. Things are not really going their way. If you haven't checked out their blog you really should...just so you know exactly what I am talking about.

Sorry I haven't posted any updated pictures, hopefully I will be able to this weekend...so be on the look out!!!!

Kaden'sBirthday Bash

Today we celebrated Kaden's 3rd birthday!!! This years theme was Elmo. I think he enjoyed it. He actually tried opening his presents, with a little assistance from daddy. My parents, sister, grandma, Nate's parents and the two of us went in together and got him a F-150 battery operated truck. He loved it. He got in it and started waving bye-bye and blowing kisses to everyone and then took off. It was the cutest thing. I was worried that he wasn't going to figure out how to work it...but boy was I wrong. He was worn out by the end of it all, and so was I. He tried busting the pinata and played pin the tail on the donkey (although he cheated and took the blind fold off!!!). I was excited that he played such a big part in this birthday, much different then the last two. I guess that's what comes with getting older. I will be posting pictures hopefully in the next day or two.

P.S. We met a family at CMH, when Kaden had his tonsils removed who has a blog of their own. Their little girl, Gabi, (7 months old today) is unexpectedly still in the hospital and having many complications. They could certainly use your prayers. You can check out her blog...it is gabrielesheridan.blogspot.com
I know that some of you already know about her, but please continue to pray for her and her family. Thank you.

Since then...Aug.2007

Kaden is a few days from being three and a long way from where he once was. Kaden still requires the ventilator support and a feeding tube to receive nutrition but boy has he made a drastic improvement since 2005. Kaden has had a few more surgeries to repair the diaphragmatic hernia that just did not want to stay intact. Since his last surgery for the repair ( in Dec) Kaden's diaphragm hasn't been an issue (knock on wood). He had a surgery at the end of June to remove his tonsils and atnoids and the doctors decided to use a little camera to look at his airway. What they found was a little disappointing. The doctor came to us and let us know that she believed that Kaden's vocal cords were paralyzed. For those who may not know, this means that since they are paralyzed closed he can make noise but he can not get air past them to breath, they need to be opened to breath. She believes as of now that he will need the trach for life. It is up to him and his diaphragm to come off of the ventilator. This little boy is absolutely amazing and has proven so many people wrong, I would not be surprised if he does it again!!!

Kaden will be starting pre-school in a little over a week. We, as parents, are so excited for him but have many, many butterflies in our stomach. Our little angel is growing up. He is so smart, and I am not just saying this because he is my son, but this little guy can spell over ten words, including his name, knows his colors and numbers. He knows about 75-100 signs. Let me remind you that he is just turning three in a few days. Like I said he is absolutely amazing. He has taught my husband and I a new meaning for life. We feel absolutely blessed to be the parents of such a fun loving, incredible little boy. He is the love of our lives and a joy to be around.

Written in Oct. 2005

Kaden Thomas Boeckman was born August 14, 2004 at 4:45 in the morning weighing 9lbs and 13oz. From the outside he was perfect, while the inside was anything but. Kaden was born with a diaphragmatic hernia.

A diaphragmatic hernia is a hole in the diaphragm. Sounds simple, but children with these hernias have only a 50/50 chance for survival. In Kaden's circumstance the left side of his diaphragm did not develop completely leaving a hole in which his stomach, intestines, and a part of his spleen went through, crowding his chest cavity. His heart was pushed over to the central/right side of his body, his right lung was partially developed, and his left lung was hardly developed at all. Even in the best of scenarios, children with these hernias are extremely ill and require intensive support. Unfortunately, Kaden's course has been much more difficult than most.

Kaden started life at the KU Medical Center, where I was flown from Manhattan by helicopter to give birth. At birth he was put on a breathing machine (a ventilator). By the end of his first week of life, struggling to survive, Kaden became deathly ill. The doctors told us that he had less than a 20% chance of making it. They decided the best thing to do was to transfer him to Children's Mercy Hospital (CMH).

At CMH the doctors decided that the best chance for Kaden's survival was for him to be put on ECMO (extracorporeal membrane oxygenation circuit). This procedure included entering tubing into the two main arteries of Kaden's neck. This tubing carried Kaden's blood through a machine adding oxygen to his blood while removing the carbon dioxide from it, assisting his failing lungs. It was not a guarantee for Kaden's recovery, but without it he would have died.
After eight days on ECMO, Kaden made a much needed improvement. He was well enough to be taken off of this life support, although he would still required the support of the ventilator to keep him alive. However, once Kaden came off of ECMO he became severely ill with an infection to his blood. The surgeons were able to do the surgery to repair his diaphragm after about two weeks of ups and downs and lots of praying. Kaden was not as stable as the doctors would hope, but it was a must for Kaden to have this surgery, it was a now or never situation.

Kaden had been living with nutrients and lipids. About one week after his surgery, the doctors decided that it was time for Kaden to start feeding. They put a tube through his nose that went down to his stomach, and this is how he was fed. As if this poor little guy hadn't gone through enough, now he couldn't tolerate his feedings. After extensive searching, the doctors found a problem with his stomach, it was twisted. Three weeks after the last surgery, Kaden was under the knife again, this time to fix the problem with his stomach.

When Kaden seemed to have recovered , and was tolerating his feedings we began the use of a bottle. Kaden had other plans. After everything this sweet baby had been through he developed a severe oral aversion. He lost the natural ability to eat and swallow.

December 1st came yet another surgery. This included a feeding tube that was inserted into Kaden's abdomen as well as a fundoplication which means tying off a valve to keep the acid in Kaden's stomach from refluxing. Learning how to care for the feeding tube was very intimidating for us as parents at first. Little did we know what was yet to come.

A couple of days after Christmas we were told we would get to go home with Kaden. After staying at the Ronald McDonald House for four months we were ecstatic to go home and finally be a family. After two nights in the parent room with Kaden at the hospital, he became extremely sick, running an outrages temperature of 105.7F. Back into the NICU he went. Awhile after being back on the floor, Kaden began to have seizures from having such a high temperature. He also was having problems keeping his oxygen and carbon dioxide levels in a safe range. After doing blood work, an infection was found yet again in Kaden's blood. This infection stemmed from a central line Kaden had which was pulled the first day we were able to stay in the parent room with him.

Kaden was having other problems as well. The doctors couldn't put a finger on what was going on with our sweetie. Before being put on the ventilator and then after being taken off, Kaden was having issues breathing when he would get upset. Even so, we were back in the parent room with Kaden at the end of January, but again Kaden ended up back in the NICU.

As time went on Kaden had a harder time breathing and it just kept getting worse. The doctors finally got the family together and told us that without a tracheostomy Kaden would not survive. Although, they didn't know with the condition Kaden was in how well it would help. It is the most difficult decision as parents to make...choosing a life for your child of uncertainty or death. We have seen the fight in our little one's eyes, the drive and the determination to survive, and we felt like we had to give him every opportunity in the world. It is hard to give up on something or someone you love so much and that you believe in with all of your heart.
After the trach, Kaden was back to his happy, smiling self. He was doing wonderful. Suddenly, Kaden stared behaving in ways that weren't normal for him. After a chest x-ray, the doctors told us the news, Kaden's patch that repaired his diaphragm had popped, as well as the fundoplication. A little after a week of having surgery for the trach, Kaden was now going into surgery to repair the patch.

Kaden began to have the difficulties that he showed previously with having trouble breathing, although he was assisted with a ventilator that was attached to his trach. Time went on, each day as slow as the first. I was there with Kaden every day, staying at the Ronald McDonald House (which I adopted as my new home, and I think it adopted me as well). Kaden's dad came up on his days off, because unfortunately he had to continue to work. After being there for ten months the nurses and staff at CMH were determined for us to take some time and go out as a couple. A social worker had gotten us tickets for a Royals baseball game, and although we were hesitant to leave...we decided to go. However, I called about a hour and a half after we left. Kaden's report was alright, he had been fussy, but ended up going to sleep. I will never forget what happened next. I called again, about a hour after the first call. A frantic nurse answered the call telling me that we needed to get to the hospital as fast as possible. I have never been in a moment that passed so slow. She informed me that they had to do chest compressions on Kaden, that he wasn't able to get air to his lungs although he was on the ventilator and he wasn't maintaining his heart rate. When we got to his bed side our world turned upside down. The nurses working in the same area of the NICU that Kaden's bed spot was in, were in tears. Kaden's dad picked him up and he was limp. We thought he was gone. The doctors took a blood gas and his carbon dioxide levels were as high as they had ever been. They told us that they do not know anyone who has survived with such a high level and it didn't seem that Kaden would either. We did all we knew what to do at the time. We held him, kissed him, and told him just how much we loved him. We told him how proud we were of him and how lucky we were to have a chance to love somebody so special and have him in our lives. He had passed everyone's expectations. We called our family's and my dad decided he was coming up to Kansas City.
The fight came out in Kaden yet again. As I was holding him, crying and trying to give him all the love that somebody deserves in a lifetime, he opened his eyes and looked up at me and then at his dad. He just stared at us for a moment in a daze, not sure what was going on. What happened next was a miracle and shows the will of this little one, he smiled at us and then in a minute he was ready to play. My dad got to the hospital (in record time, may I add), not knowing what to expect. Much to his surprise Kaden was sitting in my lap playing, smiling, not knowing the grief everyone had just went through.

The doctors had decided the next thing to do would be to put a scope down Kaden's throat to see how his bronchial tubes functioned. They found the problem he had been living with the past eight months. Kaden has a condition in which his bronchial tubes have spasms and he can not get air to his lungs. Knowing the problem helps us know now what to do to help Kaden in a situation in which those tubes do collapse. So then it was decided that it would be in Kaden's best interest to be at home. The doctors didn't give us much hope, telling us that he would be the sickest baby that they have ever sent home. They didn't believe he would have a long life and that we would probably be in the hospital more than we would be at home.
Well, a week after we were home, Kaden was headed back to the hospital. For 11 days we were back to how our lives were for the last 11 months, fortunately we were back home before we knew it.

We were able to celebrate Kaden's first birthday at home with family. Even a few nurses from the NICU came down to help us celebrate. Kaden is doing extraordinarily well at home. He has physical therapy a couple times a month, but he definitely is not the biggest fan of it. We have trips to CMH about once a month, in which everyone there is so amazed and impressed with how well Kaden is doing. He is still a very sick baby, but looking at him one would see how happy and outgoing he really is.

Kaden has home health nurses that come into our home, averaging about 106 hours a week. As parents though, we feel that we should be the ones taking care of our baby, and of course, Kaden is more comfortable with us taking care of him. The nurses do make it easier for us to get out of the house if we need to, and they are there to provide an extra hand if needed. It has taken a lot of getting use to though, having somebody we don't know in our home.

"To call Kaden a miracle would be an understatement," as one surgeon stated. He has endured much more than any average person would have to in a lifetime but keeps on fighting all the while with a smile on his face. This was the largest and most terrifying roller coaster of our lives, but at the end of it all we would do it again to help this little angel feel as special and important to our lives as he really is.

We want to thank those who have given us support and who have kept Kaden in their prayers, your generosity will be in our hearts forever. God Bless.