2013 Update!

Stockton sure has grown since my last post.

Our babies!

The Watson Family 2013

As you can see it has been over a year since my last update. I have to say that so much has happened in these last 18 months. I have noticed lately that we are getting a lot of hits on this blog, almost 3,000, and I am sure it is because other HLHS  parents are looking to connect with other families. I have realized that part of my own therapy and dealing with Stockton's health issues I have to start writing in this blog more. There are too many nights that I fall asleep crying or sleep in his room because I need to hear him breathe. It helps to connect with other parents and read their stories. I have wanted to post for quite some time now but raising three kids isn't easy.

Yes, I said three kids. Stockton became an older brother in March of this year. His little brother is named Merrick. Merrick is heart healthy just like his big sister, Tylee. Stockton is such a wonderful big brother. Stockton is constantly playing with his siblings. Sometimes he can be quite naughty by pulling Tylee's hair, knocking baby M down or taking their toys. Most of the time he is giving kisses, playing trains with the baby or doing anything that involves Mickey Mouse. Another big change since my last post is our big move last year. We no longer live in Houston. We decided to move back to Utah to be closer to our families. We went through so much in Houston and it was so hard to be away from those that care about us the most. Fortunately, my husband is able to run his business from Utah. We are so grateful that things have worked out.

The main reason for this update is to give you a little info about Stockton. We have had visits with cardiology every 6 months. We just had our third check up on December 17th. We also have been seeing cardiologists at Primary Children's Medical Center (PCMC) and continue to follow up with Dr. Ocampo at Texas Children's (TCH). Our visit this week was to TCH. Stockton had an EEG, an ECHO, and a 24 hour Holter. We also had blood pressures and O2 Sats checkes. We usually have an x-ray but we have had those every 6 months in Utah. We met with Dr. Ocampo and we discussed Stocky's future. Usually they plan to do the third open heart surgery when the child is 3 1/2 to 4 years old. Stockton is growing really quickly so it looks like it would be around 3 1/2 years of age. If you click back through this blog then you may remember that Stockton caught RSV when he was suppose to have his Glenn surgery. We postponed the surgery a few weeks so that he could get healthy. Stockton turns 3 1/2 in January of 2015. This is the peak of RSV season and we really don't want to do his surgery during the Winter months. Especially, because Utah winters are the worst and RSV is crazy out here. We spoke with Dr. Ocampo and we suggested maybe doing the Fontan surgery after he turns 3. She was open to the idea and said that there was no reason to wait because Stockton was growing well and quickly that she feels he would be ready at his third birthday. Stockton turns 3 on July 30, 2014 and we are looking at the Fontan surgery in August or September of that year. We are making an appointment with TCH in April and we will have to be admitted to the hospital for him to have his heart cath procedure. From this procedure we will have our case looked over by our cardiology team and Dr. McKenzie (our heart surgeon) will evaluate our plan. Dr. Ocampo is really open to all of our suggestions and she has really guided us through this process. Dr. Ocampo said that Stockton's ECHO and EEG looked great. His tricuspid regurgitation has remained the same and not progressively worse. We talked about what type of Fontan surgery Stockton would have and TCH's method of choice is the extra-cardiac Fontan without fenestration. We discussed our options in great detail and we will know a lot more when we have our cath visit in April. Stockton has been growing really well and weighs 27.5 pounds. I need to find his height chart. His arteries looked good, his heart is pumping well and his oxygen saturation remains the same at about 85%. (We were worried about this when we moved to Utah but the elevation has not phased him one bit.) We are waiting for our Holter monitor results and we will get those in about a week. We are still on the same medication. We take 0.5mg of Enalapril twice a day and 40.5mg of Aspirin once a day. Dr. Ocampo is thrilled with Stockton's progress and so are we.

Now we are letting the anxiety set in. With the Fontan in the near future we are starting to make plans for April, the summer and the school year. We have had this surgery linger over our heads for years. I honestly have prayed so many times that we would have Stockton stay in our lives. I worry about him every day. We are so blessed to have such wonderful family and friends in our lives. Sometimes our lives are so consumed in helping Stockton to be healthy that we forget to take care of ourselves. Stockton has tackled HLHS like a champ. We hug him a little tighter, we kiss him a little more and we definitely talk about him a lot. We appreciate all the prayers and we continue to ask for them. We love our Stocky Boy! ♥ LOVES