Cardio Appointment

Our cardiologist appointment on Wednesday went pretty well. Caden had an echo cardiogram on his heart to check out how everything is looking. I really love his cardiologist, but I think that these doctors from CHOC are very busy and sometimes forget the "ins and outs" of each patient. During Caden's echo the Dr. said he was going to see if his PDA was closing up. I was a little confused because I could clearly recall that we closed that annoying hole in his heart during a surgery at the hospital. I asked,"wasn't that repaired already?" And the doctor looked a little embarrassed and said,"Oh, yeah. That's right. That was repaired." Hmmmm? Well, good thing he doesn't have anything else serious going on with his heart. He does have a little hole called and ASD that looks like it is closing on it's own, and a thickened muscle in his heart, but the Dr. felt that those were not going to be a problem down the road. Caden was cleared for his lip repair surgery from a cardiology standpoint and that was great to hear.

Caden had feeding therapy, too, this week. His Tuesday appointment went like this: Load up the car with all of his crazy equipment-go a little mad trying to find parking-load him and crazy equipment into his stroller-practically run to get to his appointment on time- get into the therapy room and take him out of the stroller-attach electro-nodes on his neck- Caden screams bloody murder for a half an hour- load him back up and drive home in a sweat. I am sure these therapy sessions will pay off, but I think it will take awhile to get some things accomplished. They turned on the electro-nodes for about 5 minutes and then the therapist watched me try to calm my insanely upset baby for the remainder of the appointment that we ended early. I think he may have a little post traumatic stress from being in the hospital. I truly don't blame the guy, but I hope he can calm down in the near future so we can progress with his therapy. Thank goodness my mom came along or I may have been hospitalized for an emotional breakdown.

We are a little nervous for Caden right now because he seems to have come down with a little cold. The girls have had the sniffles lately and I think he unfortunately caught their bug. We are praying that he doesn't get any worse. It is scary because he already coughs so much on the mucus he has trouble swallowing, so it is ten times worse adding a cold to the situation. He was also supposed to have a small surgery on Monday to replace his original g-tube with a new type of tube, but we will probably have to delay this.

I did get a nice reprieve today. My mom and in-laws took turns taking care of Caden while I got to watch Natalie in two traveling All Stars soccer games in Laguna Niguel. It was great to get to enjoy watching her play and spend some time with the little girls. I posted a few pictures from the games. I am sad to see the soccer season end now because it was a nice escape to watch her play.

Heading into another crazy week, but thankful for our life starting to fall into a new pattern of "normal".

Mary

By the way, some people have mentioned that they are having trouble posting a comment, so I changed the comments settings. All you have to do is write your comment and then choose the "anonymous" label under the "comment as" category. Just make sure to include your name in your comment. Thanks! I love hearing from you guys:)

It was a really nice change not having any appointments this week. I felt the most "normal" I have felt in a long time. We enjoyed some relaxing family time having tea and fires and watching the rain. Next week it is back to the grind of appointments and therapy twice a week...:(. I know it is all in Caden's best interest, but I dread it so much. It is in those times at the doctor or at a therapy session that the reality of what is going on with Caden is abundantly clear. I like living in the bit of denial I get to be in when we are just hanging around the house. I try not to let my mind wander too much and just enjoy the moment.

Caden has become Mr. Smiley lately. It is a sure fire cure for my worries when his face lights up with one of his big grins. His eyes are so full of life and draw you right in. You just can't help but fall in love with this little guy. He goes through so much and yet it hardly seems to phase him. I think his lack of memory comes in handy. Babies have a nice way of forgetting things.

Next week we have a follow-up with our cardiologist. We are hoping that Caden's heart is doing well, and that his blood pressure is better. This appointment will help determine when Caden can have his lip repair surgery. I'll keep you posted~

Mary

Appointments...

We are starting to recognize the theme of this year - appointments. Not exactly the way one enjoys spending the day, but necessary to keep Caden healthy and thriving. Ironically, as most of you know, this is being faced with what fuels my anxiety every day. I have always had health related anxiety and it has been difficult to go to multiple doctors hearing the multiple aspects of Caden that we need to be on top of throughout his life. I compare it to someone who has a fear of heights being told they have to live on the roof of a skyscraper. I feel like I am in panic-mode a lot of the time. My mind really wanders (you know this!), and I imagine all sorts of scenarios for our life with Caden.

We met with a pediatric ENT this week. He was about as friendly as a rock, and treated Caden as if he were a science experiment; poking and prodding for over an hour while Caden screamed hysterically. Just a blast!!! I left in tears and Chad was a little peeved to say the least. It wasn't that he was giving us information that we didn't know, it was the way he was delivering this information to us. Summing things up he feels that Caden is at high risk for aspiration because of his reflux and difficulty swallowing. He also wants us to wait on the lip surgery because Caden has one very narrow nostril that will be difficult to breathe through once his nose is repaired. He said Caden's throat is very raw and swollen from refluxing, too. He wasn't very positive in the whole hearing department, either. Caden is going to have a repeat hearing screening so please pray that we will get a little positive news compared to the the last tests.

We met the the GI doctor, too. She took Caden off of one of his medications, Reglan. This has seemed to really help him. He is less irritable and the larger vomiting spells have really improved. He is still on a 24 hour drip feeding schedule, but we were given the O.K. to try and condense this. We are hoping Caden will tolerate a larger amount of food over a shorter period of time.

Lastly, we met with a occupational therapist that is going to work with Caden on his oral feeding abilities. We will need to go to CHOC twice a week for these appointments. They are going to try many different types of bottles and they will be doing a muscle stimulation treatment. We really hope these help him to learn how to eat more efficiently. I cannot wait for the day I can kiss this feeding tube good-bye!

After one of our long appointments we came home and the girls put on quite a performance. They really know how to lighten the mood around here. They are so funny doing these little dance routines. It reminds me of when I was younger and I would force my brothers to dress up like girls and dance with me (sorry Rob and James!). Poor Caden. If Natalie is anything like me there is a dance routine waiting for him someday!

Thanks for all the well wishes, and keep the prayers coming!

Mary

Out of the House

Today we got out of the house for the first time as a family of six. Now it was only across the street to the girls school playground, but it was still an outing nonetheless. We loaded Caden into his stroller with feeding tube, pump, syringe, and headed towards the school. Natalie packed a backpack full of food and drinks as if we were really going on a long journey. It was really cute to see how excited the girls were that we were all going to the park together. Natalie and Chad practiced softball, and the little girls and I went to the playground. It was really nice to do some "normal" things together as a family.

Caden is still having his reflux problems. He is up more and more in the night from discomfort and coughing spells. It is enough to leave this mom and dad pretty exhausted. We are going to see his GI doctor tomorrow (yes I got in!!). Hopefully she can help adjust things to make Caden more comfortable.

Caden otherwise is doing well. He is growing and has a lot of quiet content time during the day. Thanks to my awesome mom I am able to get out here and there. I was able to go see Natalie in her All Stars soccer game and that was really nice. She seemed so happy to have her mommy there. I feel like I have missed out on a lot of the girls activities these past two months. I feel very blessed that my mom feels completely comfortable watching him and I fully trust her. She has really made it possible for me to get some much needed breaks.

We are very thankful for all the prayers and support.

Mary

I Spoke Too Soon....

I knew I shouldn't have spoke too soon! Remember back a few posts when I mentioned how wonderful it was that Caden slept through the night? Well......things have changed. Oh, sweet sleep, how I miss thee!!! Our sweet little Caden has decided to burst out in crying fits in the night, followed by vomiting, followed by full clothing and diaper changing (possible pajama changing for me). This seems to usually occur in the deep sleep hours of 3:00-4:00a.m. I am just groggy enough to sometimes forget to put a changing pad down on the bed which usually happens to be the time Caden poops everywhere. Oh how things can change. Just when it seems that I have drifted back into a nice sleep I wake up in a panic wondering if I slept through Caden's 5:00a.m. medications. Then I go back to sleep and hear the buzzing of his feeding pump alarming me that I need to pump to give Caden more food. After that, it is usually time to wake up and get the girls ready for school. As you can probably imagine, yes, I am a walking zombie most mornings.

On a good note, Caden was really great today. Very alert and full of lots of adorable smiles. O.K., Caden, I forgive you. The picture I posted was the sweetest moment that I captured. I asked Natalie if she could watch Caden for a minute. When I walked back out to the living room Natalie was reading her book for her homework reading log while holding Caden's pacifier in place. Already a little mommy in the making mastering the art of multi-tasking! The girls are so wonderful with Caden. He just loves them too. It is the best part of all this chaos watching the girls interact with him, and the fact that they are so proud and loving towards him. They open my eyes constantly to what really matters. They show me the meaning or true acceptance and complete unconditional love. This little man entered their life in such a crazy way with so many challenges and they are full of love, protection, and acceptance. It is a real testimony to what family is all about. I am so proud of them.

I just had to add something funny Cara said the other day. Chad was watching Caden while I ran to the store. When I came home I asked Cara if Caden had coughed a lot when I was gone. She replied,"No, he just had a lot of cleft lips." I am still smiling at that one.

I also want to thank a couple of my dear friends who really cheered me up today. Thank you for going out of your way to show your love for us. I really miss you guys and can't wait to catch up soon (in person :).

Mary

Caden's New Look~

Today we had an appointment with our plastic surgeon from Saint John's Hospital in Santa Monica. It completely confirmed that we made the right choice going with her. Dr. S and her nurse spent an incredible amount of time with us. They are so easy to talk to and never make you feel rushed for time. They are open to answering all the questions we have, and help bring some hope into this crazy life we are living right now. It is definitely worth the commute.

Caden weighed in at 10 pounds 2 ounces today and they felt that he looked great considering all that he has been through. They said he may have his surgery as soon as February which would be amazing! I can't wait to see how he looks after the lip surgery. We think he is adorable now so I can only imagine!!! Dr. S. put some new taping on Caden's face to help mold his premaxilla (part of the gum and lip) into place prior to surgery. Poor little guy seemed a bit uncomfortable in his new face gear, but it should really help in yielding a nice result for his repair. We have to keep this on him as much as possible, but it is hard to do when he throws up and is having a hard time breathing. I finally had to take it off tonight for a bit because it seemed like he was struggling to breathe through his nostrils. He looked a lot more comfortable, so I know this is going to be a challenge to have him wear this all the time. He is always in so much discomfort because of the reflux that it is tough to add something else to his plate. Tonight he was really having some terrible reflux spells. My heart just breaks to see him throw up and then gasp for air until I can suction enough out. Then he cries and cries until he is so exhausted that he falls asleep. This happens quite a few times throughout the day and I really would like to get to the bottom of why he has such a difficult time with the reflux.

The frustrating thing is that we can not change any of his reflux medications or his feeding regimes until we see the GI doctor again. The even MORE frustrating thing is that the GI doctor said she wants us to come back in a month and when I tried to schedule that appointment the scheduler said that the doctor is completely booked and Caden could be on a waiting list for February. I said that that was completely unacceptable because my son needs to be seen, and if the doctor said it should be in a month then he should be seen then. The scheduler said that this happens all the time. That doctors will say they need to see their patients in a week and they usually can't get them in for a month or two. WHAT??!!! I was so infuriated that I said I would like to speak to the doctor. I was transferred to the nurses line and left a message which has not been returned yet. This GI doctor is through CHOC, but we are considering looking elsewhere because I cannot be put through this waiting game when Caden's health is at risk. It is not okay to make these babies wait to have follow-ups that are so important. Thank goodness we have great health insurance giving us the option to go where we feel is best. We are learning more and more how insane the medical field can be. You really do have to fight to be your child's advocate.

Through all of this Caden still keeps his spirits up. He is smiling more and more every day. He literally will be having a coughing spell and will smile in between each cough. He is one tough little guy, and he has proven this over and over again.

I wanted to thank everyone for their comments on the blog and the emails, and just following along even if you don't comment. It is nice to feel a connection to others when I have been either home or at doctor's appointments. I am so appreciative of everyone's love and support for Caden and us. We love all of you, too!

Mary

Reflections...

Happy New Year everyone! I hope this New Year is full of great moments for all of you. We are hoping this new year brings many good things for Caden and our family. It will probably be one of the busiest years in our lives.

Things have already started to get quite crazy with Caden's medical care. We have seen the GI doctor, pediatrician, and have appointments this week with the pediatrician again and the plastic surgeon. We are also going to see an ENT in two weeks. We have been given some pretty hard news that Caden most likely has profound hearing loss or could even be deaf. This has been difficult to process as I wonder how communication will go with him at a very young age. As a mother you always want the best for your children and want them to have every opportunity to succeed in this world. I worry how Caden will do in a hearing "world" if he cannot hear. We have been told that there are a lot of successes with cochlear implants, so I am sure that is another impending surgery for him.

All of this information in a short period of time can be so overwhelming. I have learned that I can only take things one day at a time and literally one moment at a time. So far that has been another one of Caden's gifts to us; learning how to be completely in the moment. We have slowed down our normally fast pace life to just enjoy the little sweet things that Caden brings to our lives. His adorable smiles, cute little noises, and just being a cuddly little guy. We appreciate so much more the gift of our children as we have seen the reality of living in the NICU and the fear of possibly losing a child. I am also so grateful to have a partner through all of this that is strong as a rock. I am truly grateful for how amazing Chad has been through all of this. It is another gift that Caden has brought; showing me just how blessed I am to have married my best friend, someone deeply rooted in faith, and a father that loves his children beyond description.

As we enter into this new year as a family of six I am filled with much hope for what the future may bring, and some anxiety too. 2009 showed me that life is so completely unpredictable. I never in my entire life could have imagined having to face the situations that we have faced with Caden. I became part of a world I never really knew much about. A world where parents are faced with life-threatening struggles for there children, and the simple things we take for granted, like hearing, are a miraculous gift that not everyone is blessed with. I have learned that nothing is a given in this life. It is not a given to want another child and be given a perfectly healthy baby. I have also learned what to put value on in this life. The things that seemed so important before really do not even hold a candle to the gifts that I am surrounded by daily; 4 amazing children, a loving husband, wonderful parents and in-laws, and supportive friends. We have been shown how people really come together in time of crisis, and I am still in awe of how many people truly stepped in to help make our lives better in time of great need.

Happy 2010! I am really ready to start a new year with a brand new perspective.....

Mary