Yesterday was a very interesting day. Gracie went into surgery at about 12:30 in the afternoon. We thought that we were prepared for what was coming. We had visited with other parents and we had seen several babies post-operation in the CICU. We’ve watched problems happen and doctors and nurses rush to the rescue, but nothing that we had been through could prepare us to see the doors of the operating prep room close and for us not to be able to be there with Grace.
There was a feeling of helplessness that I can’t really even explain. We literally had to but our babies life in the hands of those attending to her.
They told us that the surgery would take somewhere between 4 and 6 hours and gave us a pager where they could send text updates throughout the process.
They explained that they would give us updates at certain milestones. They said that it would take about an hour or so to get her sedated and stable, then another hour and a half to get her on the bypass machine, then a couple hours for the surgery and an hour or so before they would bring her back to the CIUC.
We sort of wandered around like zombies, sat in the Ronald McDonald room in some recliners and talked with Jen’s mom for a bit. Each time we got a new text update, it was like having my heart jump out of my chest.
Finally when they pages us and told us that the doctor had finished and would be out to talk with us in about an hour, I got very anxious. I couldn’t really sit still, but walking or standing didn’t seem to work either. I’ve felt anxiety throughout my life, but nothing quite like this. We walked down to the surgery waiting room where they put us in a small consultation room to wait for Dr. Griffiths.
Dr. Griffiths came in and explained to us that Gracie had done well and that they were able to take care of the issues that needed to be fixed. There had been a small complication when they drained the blood from her heart. They had put her on a bypass machine that basically acts as an external heart. They take the blood out of her body, filter it, oxygenate it and pump it back in, but it bypasses her heart while they do the surgery. When they drained her lungs, it also drained some blood from her coronary arteries because of the dependency she developed due to high pressure in her right ventricle. They took measures to stop it and they said that she recovered quickly from it.
He also explained to us that she would be back in the ICU in about an hour and that they had been able to close her chest which was a really good thing. She would have tubes coming out of her chest to drain fluid and help with swelling and her entire body would be very swollen.
Again, we thought that we were prepared to see her because of all the other babies we had seen. It was so much different seeing our own baby laying there lifeless with all the tubes, machines, and doctors around watching her. It felt like we were in a movie or something. It was so overwhelming we both just broke down. We stayed for a while, but they told us that it would be a difficult night and to expect alarms and some big dips. We decided that it would be better to let them do their thing and go get some rest and be with our other kids. We both just cried all the way home and then sat and cried with our family. It was cathartic and helped to get the emotions out.
As we talked, both Jen and I shared something that we had felt in the room. As we sat and watched Gracie, we both had a very strong feeling that she wasn’t even in her body. She was being taken care of by all of the people who have gone before her. Her Grandpa Richard’s was there teaching her about adversity and health challenges and encouraging her. Her Grandpa Bradshaw was there teasing her and making her laugh and teaching her the power of a good attitude. Her aunt Aubrey was there telling her how lucky she is to get to experience life on this earth. Those are just a few of those who we believe were there with her. She got to leave her body for a while which was a huge blessing for her. This morning she is back and fighting.
She had a few complications over night. She had a lung collapse but they were quick to address it with the ventilator and it is looking better. She is not urinating like the would like to see to get rid of waste and help with swelling, so they are giving her some diuretics to help with that.
The doctors just finished their rounds and it is amazing how much they know and how many people are focus on our sweet daughter. Most of what they talk about we don’t understand, but they always stick around to answer any questions. They told us that it looks like Gracie is doing pretty good other than a few things they are working on, but that Gracie wants to take things slow and won’t let them move too fast. It sounds like it’ll be several days before they even try to get her off the ventilator.
I am so grateful for family and friends. Our other kids are so helpful and understanding even though they are hurting. They have so much faith and hope and are amazing examples to me. I don’t know what we would do without all of those around us to support and help with all of the things that Jen and I have had to just drop and step away from. It really is a miracle that we can keep moving forward. We feel the love, support, faith and prayers each day and we are so glad that we can share Gracie with all of you.
We’ll let you know how the day goes.
#GOGRACIE #GRACIESHEART
13:12 – We just got back from a nice lunch at Ruth’s diner and they told us that while we were away, they did another x-ray and her right lung is still collapsed. Her blood pressure has been dropping and her oxygen saturation is really low. I’m going to keep updating this note as things change. This is the hardest thing I have ever had to deal with. It truly is a minute by minute process.
Later in the day: So far this whole day has been a struggle. They are doing another surgery right now to put an additional chest tube in because she has excessive fluid that is not draining.
She is sedated and on a paralytic. She’s still in the fight!
They said it’ll take about an hour. Hopefully all goes well.
She is sedated and on a paralytic. She’s still in the fight!
They said it’ll take about an hour. Hopefully all goes well.
After the extra chest tube was put in:
The procedure went well but did not correct the problems they hoped it would. They are still working to figure out what’s going on.
They are going to do another echocardiogram to see if the valves are behaving in her heart.
Her blood pressure dropped, her blood oxygen dropped and her heart rate went up. All things we don’t want to see.
What a nightmare…. I miss the beach.
Keep fighting Grace… We all love you!
They are going to do another echocardiogram to see if the valves are behaving in her heart.
Her blood pressure dropped, her blood oxygen dropped and her heart rate went up. All things we don’t want to see.
What a nightmare…. I miss the beach.
Keep fighting Grace… We all love you!
Just a final note before we try to get some rest. Gracie finally peed which is a good sign. They have been wanting her to do that all day.
She is defiantly not out of the woods but it’s nice to have some good news.
Praying for a good night.
She is defiantly not out of the woods but it’s nice to have some good news.
Praying for a good night.