But it's so worth it!

Today we packed up and headed back to the hospital for Lauren's heart check up. Surprisingly enough, we made it there on time and Lauren was in a fantastic mood. Over the past few days I had spoken with her about going to the hospital and having to lay down very still while someone looked at her heart. I didn't know how much she understood or if she was just saying, "Okay!" so I would stop talking (both perfectly feasible).

When the echo tech came to get Lauren, she popped up out of her seat, headed out in front of the tech and said, "Come on! This way!" and walked confidently towards the echo room. The echo went incredibly smoothly. Lauren got to watch Dora, which she sees very infrequently but seems to be a big fan of, and she didn't even want to get up when the echo was done (maybe because Dora was still on). I enjoyed the echo because it gave me a chance to chat with the echo tech who I hadn't seen since she got married and now she is 38 weeks pregnant. (And Elyse just chilled on the bed beside Lauren because she is the easiest baby ever!)

Then we headed in for Lauren's EKG and pacemaker check. Here, I got to chat with the cardiology nurse who has been on mat leave for the past year (twin boys) and the nurse who does the EKG. In the middle of this lovely chat I realized just how much time we've spent in the hospital with these people, that I would know so many details of their lives and that doctors and nurses that we see in the hospital hallways would know Lauren's name. There are so many things about Lauren's heart that I love and so many things that I hate. Often those things are one and the same. I love being able to enjoy seeing people at the hospital and catching up but I hate that I'm able to do that. I love resting my hand on Lauren's chest while we cuddle when I put her to bed at night, feeling her heart beating hard and strong, but I hate what we have gone through because of it, fully knowing that it is only because of her heart that we have become the people that we are today and I wouldn't want to give that up. It is a confusing, twisted maze of emotions.

But then the pacemaker scan popped up and relief began to hit me. Last time, in a 6 month period, Lauren had used her pacemaker over 1000 times, approximately 3% of the time. They changed the settings a bit to allow her heart to function more slowly but still pace her when her heart stops and this time the results were very encouraging. In July, she paced 5 times. In August, only 2 and in September, she has only been paced once! The pacemaker registered episodes of her heart rate being higher than usual but many of these occurred at 11am, 4pm, 6pm or 7pm, all explained by gymnastics, park time, daycare play time, and after dinner walks (which usually end up being all out sprints for Lauren. "Run, mom!!"). Lauren has never been paced this infrequently!

When we went into the exam room I kept waiting for the other shoe to drop. There has always been a "but..." to each visit. There was no but today. Lauren's heart has stabilized. Her aorta is still pinched but it is growing with her, not staying the same size as she gets bigger. Her heart muscle is still a bit thick, but no thicker. And her heart is functioning like a regular heart.

Regular. What an amazing word. Normal. Expected. Happy. All of these were words that we heard today. Unexpected words with no but. I might lose some more blog readers because Lauren is just regular but it's a chance I'm willing to take.

After Lauren's appointment we saw one of the ICU doctors who had cared for Lauren, said goodbye to her cardiologist who is heading off to finish her specialization at a few other hospitals before finding her forever hospital, and saw Lauren's surgeon in the hallway. He is almost never wandering around and Matt and I were thrilled to see him (we both have hero crushes on him - it's hard not to when someone saves your daughter's life). In true surgeon fashion, he asked Lauren for a hug so that he could feel her pacemaker and she thought that was a game as she danced around in the hall pointing out the colours of each of the doors close to us. At the end of our chat with him, Lauren went up to him, gently ran her hand down his face and gave him a hug before flitting away again. She must know that he has a special place in her life. I guess she has a hero crush on him as well.

We left today with a sense that a chapter of our life is done. Lauren was taken off one of her meds and the doctor gave us instructions to take her off another one only one month from now. The goal is to have her med free by the time she heads to kindergarten. We are headed towards normalcy. However, this will always be a part of our story, a big part.

Walking out today, I knew that we could leave and not look back, only let this be a passing thought next summer when her appointment is coming up again. But that's not part of our plan. Matt and I are going to continue to be advocates for Children's Hospital and we have a goal. A BIG GOAL. When Lauren first crashed in the hospital, she relied on an ECMO machine. Her heart was too ruined to beat and, for three days, that machine kept her alive by circumventing her heart and moving the blood through her body. We want to raise enough money to pay for an ECMO machine. With a whopping $235,000 price tag, raising the money will take quite awhile, but it's not like we have a time limit. Lauren's going to be with us for many years to come.

1 comment:

  1. Praise the Lord! I love the word normal when it comes to Lauren's heart. You won't loose me as a blog reader. I want to hear more reports of normal about Lauren and hear how she and Elyse continue to grow.


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