Heart Surgery Anniversary

Today marks a big day in Caden's life. On January 24, 2009, Caden was taken to the OR to repair his coarctation of the aorta and have his diaphragm plication. We had been waiting for two weeks since his birth for this day. It had originally been planned for the 23rd, but when we got to the hospital that morning, they told us it had been put off due to more “urgent” cases. We were really frustrated because we didn't know when it was going to happen. But we had to trust that things happen in God's timing, not ours.

But very early the next morning (Saturday), Caden's primary nurse in the NICU, Irene, called us in our room at the Ronald McDonald House and woke us up, telling us his surgery would be that morning. We quickly got ready and over to the hospital so we could hold him and pray with him before the anesthesiologists took him to the OR. Then, we had to kiss our precious baby goodbye and watch helplessly as they rolled him through the huge double doors to surgery. The moment we had been waiting for, yet were terrified about, all at the same time. The mix of emotions is incredible.

We waited for what seemed like an eternity. But finally Dr. Reddy came out to tell us the surgery had gone very well and that Caden was doing great. What an amazing feeling of relief. But we still had to wait awhile before we could see him in the CVICU. When we were first able to get in to see him, it was a little overwhelming. There were so many tubes, wires, drains, machines, medications, etc. It was almost hard to see our baby underneath it all. We definitely cried tears of joy that he made it through surgery well and that we could be with him again. We didn't have any idea what was in store for us, but at least he had gotten over that hurdle.

Happy heart anniversary, Caden. We love you more than words can express!

What Caden looked like when we first saw him after surgery. It's almost hard to see a baby in there!

Intensive Feeding Therapy

When we took Caden to see his GI doctor right before Christmas she told us she was going to refer him to an intensive feeding therapy program called Clinic 4 Kidz with Dr. Patel. This is a very expensive program and apparently it is not easy to get it approved through many insurance companies. But it is an in-home treatment with a very high success rate (96%) of getting kids to eat by mouth. Each treatment plan is tailored specifically to each child.

Once insurance has authorized services, Dr. Patel comes in and does her initial evaluation and give us “homework” to work on until our time comes up on the waiting list (there is currently an 8-month wait). Caden was put on the list the end of December, so by the end of August, hopefully we can get started. When the team of case workers come to start therapy, they come in for 5 days straight for 10 hours/day! Then, after that, they return for 2 days every month for 3 months, followed by 1 day every month for 3 months. And, over time, they reduce the frequency of their visits.

I started the initial legwork to find out whether our insurance will cover this or not. The initial response was a resounding “no.” They said they didn't think there was any reason why they would pay for us to have therapy to change how our child eats. Apparently they have never dealt with a child with feeding issues or g-tube dependency! This could save them money in the long run if we don't have to pay for the monthly feeding tube supplies. It's just really frustrating!

But I talked with insurance again yesterday and the person I normally talk to transferred me to someone else. I gave her the billing codes used for the program to see if they were covered. She said they weren't codes that were denied or ones with strict policies involved. From her perspective, she thought it looked like it would be something that would be covered without prior authorization. But she said the person I normally talk to would need to make final confirmation regarding medical benefits/policy. So, I need to call her again next week and hopefully we will have more of an answer.

In the meantime, I had asked our GI doctor to provide a letter documenting medical necessity for the intensive feeding therapy. They called me yesterday and told me I could pick the letter up. When I read it I was very disappointed in its content. I don't think it spoke to the therapy being medically necessary at all. I will not use that to submit to insurance. I am going to call the office back on Monday and ask them to do it again.

Another great thing about being referred to this program is I got connected with a feeding support group. This is an area I have felt very isolated in. Feeding issues are really emotional for me and the thing I stress about the most. So to be able to connect with other parents who “get it” is a HUGE thing! In fact, I talked to one of the moms on the phone on Thursday and it was such a relief! We have many of the same doctors and have experienced many of the same feelings. She also told me to have the GI doctor copy the majority of the letter of medical necessity that they wrote for her son to appeal their insurance. She said it was really well done. When I call their office back on Monday I will ask them to do that.

And, tomorrow, I am meeting up with another mom to talk about our kids feeding issues. I am just so grateful to have found this group. I have felt so alone in this area for so long and it's really discouraging. So things are looking up. I definitely would appreciate prayers that we can get this intensive feeding therapy program approved through insurance. We are really motivated to get Caden off the g-tube and eating like a normal child. I'll keep you posted.

Caden's Birthday Celebration

A week ago we celebrated Caden's 1st birthday. Reflecting on the last year is a little overwhelming. There are so many emotions, both good and bad! The immense joy of Caden being born followed by the incredible lows of him having 5 surgeries in a 5-week-period and spending the first 8 weeks of his life in the hospital. Then the amazing joy of bringing him home! The year continued with it's roller coaster ride of emotions. Caden had periods of great health followed by various procedures, surgeries or hospitalizations. And the cycle continues. Thankfully though he is doing amazing right now!

On Saturday, January 9, Caden celebrated his 1 year birthday! That is a milestone he wasn't expected to reach, according to almost all the doctors we saw during my pregnancy. We were advised to terminate the pregnancy because he would not live after he was born. They said he didn't have a chance at life. We are so grateful we trusted in a higher power and allowed God to intervene in Caden's life. Our faith in Him is what has gotten us through everything and will continue to sustain us over the next many years ahead.

On Sunday, we had a party with immediate family. Greg's parents, Greg's sister and her fiance were all here. (Most of my family was out of the country on a trip to India so they couldn't make it.) We put up a banner and had balloons, and I baked a cupcake for Caden and a big cake for the rest of us. I knew that Caden wasn't really going to be interested in eating his cupcake, but I was hoping we could at least get him to play with it and smear the frosting around.

When Greg set the cupcake in front of Caden with the lit candle on it, Caden reached to grab it and everybody in the room shouted and scared him half to death. Poor baby cried! It ended up being a little traumatizing for him because of that. But he recovered and ended up laughing a little bit. He really mushed the cupcake and frosting around and got the chocolate EVERYWHERE! With a little help, he got some on his lips, tasted it and gagged slightly. Oh well, we tried!












Caden had a good day. He enjoyed his new presents, had fun playing with family and smearing frosting everywhere. He is such a sweet, mellow, happy baby and for that we are truly blessed! I know the years ahead will not be easy. He has many issues which will continue to be a challenge for him and us. But I know that he is our special gift and I am amazed at how he has touched our lives and the lives of many others!

As I mentioned in my last post, I am working on a special book to honor this momentous occasion. I am compiling all the letters, notes and photos from everyone into a digital book that I am going to have printed. I am going to get two copies so that we can have one and Caden can have one when he gets older. This was the best way I could think to honor this wonderful milestone without exposing him to many germs by having a big party with lots of friends and family. If you haven't already emailed me something for this book, I would love to hear from you. It is not too late! See the post before this one for more details.

Thank you all for your prayers for Caden since before he was born. He is proof that God is real and present in our lives. What a testimony Caden will have as he grows up! I look forward to celebrating many more birthdays with him. :)