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.

The Glenn: Day 1

As I sit here holding my husband's hand I felt the need to share a blog post. Yesterday we showed up at TCH at 8am for Stockton's pre-op day. He was pricked for some labs in his foot then later received an IV in his left hand. Our little Houdini always wants to rip out things so we taped a small towel around his arm. Tylee was with us all day and she was such a trooper. That little girl truly amazes me. I just love her. Stockton was able to have breast milk until 3am and pedialyte until 5am. Thankfully! Usually, they can't eat after midnight. Once again, another huge reason I am pro breast milk. Those few hours make such a huge difference in his rest. Stockton went back to surgery this morning at 7am. We received an update at 8:30am that the intubation and sedation process went smoothly. Stockton has an arterial line in his neck which will help measure pressures in his heart for this surgery. Seth and his father gave Stockton a blessing last night and it has helped us feel so calm this morning. We were able to fit in an hour nap which was very helpful for two exhausted parents. We will get our next update in a few hours. Thanks for your prayers.

New Date

We are to report to TCH on the 28th of December. Stockton's surgery is scheduled for the 29th with hopes that all of his blood work comes back normal.