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

Quick Update

Time flies! These last 5 months have just flown by. We truly are enjoying this time with our special little guy. He is already army crawling all over the place. We had a cardiac visit in April and they don't want to see us again until August. Is that weird or what? Stockton had his 9 month check up and he weighed 17.7 pounds and was 6% for weight. He is right where our daughter was too. We have such small babies. He was 60% for head circumference. We love his big head. We can barely fit his clothes over it sometimes. We love him. He continues to be a joy in our home and we feel so special. Stockton is only on 2 medications at the moment. He is still on Enalapril (twice a day) and Aspirin (once a day.) His oxygen sats remain at mid 80's and the doctors feel very comfortable with that. He also can say mama, dada and baba. His eyes are as blue as can be and he has the lightest blond hair. He has two teeth on the bottom and loves biting fingers. I will update again soon. Love you all!

We're Going Home!!!

Well, it turns out that we needed to have a little bit more faith in our surgeon. He always double checks placement of the pacing wires so he wanted to take a look at them himself. With one little tug the pacing wires were out and they sent us home after Stockton was cleared through the ECHO team. Stockton has no more tricuspid regurgitation and they are very happy with his progress. We have a follow up appointment next week to remove his chest tube stitches. How wonderful that God blessed us in this way!

Pacing Wires

I knew this trip to the hospital was too good to be true when they told us we would go home today or tomorrow. Well, it looks like Stockton's body has thrown us a curve ball. Pacing wires are placed onto the heart during surgery and they come out through a tiny incision in the belly. After a few days they pull these wires out but Stockton has one wire that is stuck. Our nurses and doctors say that this happens but hardly ever. Of course Stockton has to fall into that category. I am not even surprised, more annoyed than anything. The surgeon has to weigh our two options now. 1. Leave the wire alone and just cut it so it is in the belly. 2. Put Stockton under anesthesia, re-open his wound and remove the wire. I hate when Stockton is put under anesthesia because it is not good for babies. It really makes me sick. Plus, that means more days in the hospital. Last night was a little rough for him because he pulled out his IV then the nurse tried twice to stick him and she failed. This morning he was woken up numerous times then he was poked twice in the foot and then the nurse drew blood from his hand. So frustrating! Keep him in your prayers. I am not sure how Stockton stays strong, I just feel so helpless.

Day 5

We were moved from the cardiac ICU to the normal cardiac floor. Stockton is doing wonderful so now it is just a waiting game. This past weekend was a holiday which basically means things run really slowly. They have Stockton scheduled for an echo tomorrow morning and they are also going to pull out his pacing wires. He is finally able to be held but we have to be very careful. He is so smiley. We have given him pain medication just twice in the last 24 hours. He is doing exceptional but we won't know what our going home goals are until tomorrow when the normal work week starts. Thanks for your prayers.

Our Holland Baby

As most of you read this you may come to understand where my thoughts come from. Having a child that is 100% healthy and one with a disability I have come to know both sides of the playing field. As you read this story you will come to know how much I would have loved to have an "Italy" baby. I am jealous of those who have healthy children and I am jealous that they get to go out and do "normal" things. I have spent many days and nights crying about how much I miss just going to the grocery store when I want. I am jealous when parents take their babies home after 2 days in the hospital. I often get angry and upset when others can be happy during their pregnancy because mine was full of worry and "what if's." I love our sweet baby boy and I am truly blessed that God trusted me with a "Holland" baby.

WELCOME TO HOLLAND
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
By Emily perl Kingsley

The Glenn: Post Op. Day 2

Stockton is doing relatively well. They took out his breathing tube last night and removed his NG tube. He had a spell of atrial tachycardia and his heart rate shot up to the 200's. The doctors assume it was because his heart was irritated during surgery. They put him on a Esmolol to help control it. This afternoon Stockton was able to have his first bottle. He ate so fast that it made him fall right to sleep. He is on pain meds as needed and seems to be tolerating it well. He had a pulmonary artery line that was placed in his neck so they could measure the PA pressures. During this surgery pressure changes so much that it is very important to measure it. The nurse, Jana, removed the PA line a few hours ago. All of the nurses and doctors keep telling me how big Stockton has become. They are really impressed with his progress and that makes us very happy. One thing I wanted to mention was that Stockton had a leaky tricuspid valve that caused some blood to regurgitate backward in his heart. Dr. McKenzie, Stockton's surgeon, was able to fix that because he found a little cleft that was causing it. Dr. McKenzie sewed up the cleft and he said Stockton has NO MORE regurgitation! Well, at least we hope not. I am sure we will have many echocardiograms to really see. Setts and I are doing well. We are both really stressed but joke around to lighten our mood. I couldn't ask for a better husband.