We woke up bright and early on Monday morning at 5am, our plan was that prior to surgery (what is technically called The Norwood Procedure) we were going to try and fit in as much time as possible before Riley would be taken away. Upon arrival the nurse on duty immediately made sure we got a good amount of time holding her. We always say to them "If you need to do anything please go right ahead; don't worry about us"; concerned that all of our time wanting to cuddle Riley is interfering with their work. However they always without fail want us to hold her. I think it's because Riley always seems so settled when she is in our arms. She just loves it. Very soon all the doctors arrived to collect her. I was a mess. It is a very hard thing to know your daughter who you have barely scratched the surface of knowing is about to have a very complicated surgery. So right before they took her we asked them if we could pray with her and they allowed us a moment to speak hope for her future and commit what was about to happen to God.
Following this the nurses let us know that we could sit and wait around if we like but the surgery could take a very long time so the best thing we could do is try to get out for a little while. We decided to go to our unit and distract ourselves. We watched some TV shows, had a little sleep and then went out for lunch with Jess' parents. It was surprising how quickly we became calm waiting for surgery to wrap up and receive that all important phone call.
When we finally did receive a call it was 3:45pm. We were sitting in the Parents Lounge of the PICU and they let us know very quickly that Riley was back on the ward but it would be another 45 minutes until we could see her because they would need to set everything up for her there. They also mentioned that everything had gone according to plan. It was an immense relief. So we sat and waited. And waited. And waited. The 45 minutes turned into an hour and then longer. The social worker came in to let us know that all her vitals were up and down meaning it would take a little longer. So we waited. Then the doctor and nurse came in much later and let us know that there was too much blood in her chest drain and they would need to take off the dressing and go back in for a further look at the heart. It turned out there was blood pooled around the heart so they cleaned it all up, did some scans and everything settled down.
It was over three hours since the first call that we finally got to see her. I can tell you right now whatever calm we had was beginning to disappear as the time ticked on waiting for her. When we got to enter into the PICU we got to see Riley. I had been told to expect that she would not look like herself but it wasn't like that at all. She still looked like herself only slightly more puffy and with a lot more wires and tubes attached to her. The very first thing you would notice if you saw her is the dressing on her chest. After this particular Open Heart Surgery, they do not close the chest for a few days; instead they place a dressing over it that leaves them the ability to get back to the heart if any issues present themselves. We haven't really put up any photos on Facebook or Instagram for obvious reasons. It can be a little full on for someone to see on a little baby.
The surgeon who performed the surgery spoke with us for a few moments after his eleven hour day. He said that even though the anatomy of her heart made the operation a little bit more tricky; he managed to successfully complete everything that he needed to for this first operation. Then we let him go, he seemed very tired and totally earned a good nights sleep in our books.
We elected to stay overnight on the ward so we could be nearby in case anything happened. They repeatedly stressed to us that the next 24-48 hours would be crucial for her. They need to constantly adjust her vitals and make sure that she is stable. Even though she gave us a little bit of a scare after surgery, she did not cause any problems during the night and hasn't for any of today either. We just keep believing that it will stay this way so that in the next few days they can remove the stent, close up her chest and remove the ventilator.
In other news I know that people keep asking how Jess is doing. She is ridiculously well post-caesar. In fact I tried to make her slow down so she wouldn't be pushing it. But she keeps letting us all know that she feels absolutely fine. She is a little slower than normal but she is good. We are both also feeling positive about how things are going and are confident that Riley is going to get through all these hurdles. She has completed her first surgery; that is big! There is still so much more to get through but we are glad she has passed this first milestone.
Following this the nurses let us know that we could sit and wait around if we like but the surgery could take a very long time so the best thing we could do is try to get out for a little while. We decided to go to our unit and distract ourselves. We watched some TV shows, had a little sleep and then went out for lunch with Jess' parents. It was surprising how quickly we became calm waiting for surgery to wrap up and receive that all important phone call.
When we finally did receive a call it was 3:45pm. We were sitting in the Parents Lounge of the PICU and they let us know very quickly that Riley was back on the ward but it would be another 45 minutes until we could see her because they would need to set everything up for her there. They also mentioned that everything had gone according to plan. It was an immense relief. So we sat and waited. And waited. And waited. The 45 minutes turned into an hour and then longer. The social worker came in to let us know that all her vitals were up and down meaning it would take a little longer. So we waited. Then the doctor and nurse came in much later and let us know that there was too much blood in her chest drain and they would need to take off the dressing and go back in for a further look at the heart. It turned out there was blood pooled around the heart so they cleaned it all up, did some scans and everything settled down.
It was over three hours since the first call that we finally got to see her. I can tell you right now whatever calm we had was beginning to disappear as the time ticked on waiting for her. When we got to enter into the PICU we got to see Riley. I had been told to expect that she would not look like herself but it wasn't like that at all. She still looked like herself only slightly more puffy and with a lot more wires and tubes attached to her. The very first thing you would notice if you saw her is the dressing on her chest. After this particular Open Heart Surgery, they do not close the chest for a few days; instead they place a dressing over it that leaves them the ability to get back to the heart if any issues present themselves. We haven't really put up any photos on Facebook or Instagram for obvious reasons. It can be a little full on for someone to see on a little baby.
The surgeon who performed the surgery spoke with us for a few moments after his eleven hour day. He said that even though the anatomy of her heart made the operation a little bit more tricky; he managed to successfully complete everything that he needed to for this first operation. Then we let him go, he seemed very tired and totally earned a good nights sleep in our books.
We elected to stay overnight on the ward so we could be nearby in case anything happened. They repeatedly stressed to us that the next 24-48 hours would be crucial for her. They need to constantly adjust her vitals and make sure that she is stable. Even though she gave us a little bit of a scare after surgery, she did not cause any problems during the night and hasn't for any of today either. We just keep believing that it will stay this way so that in the next few days they can remove the stent, close up her chest and remove the ventilator.
In other news I know that people keep asking how Jess is doing. She is ridiculously well post-caesar. In fact I tried to make her slow down so she wouldn't be pushing it. But she keeps letting us all know that she feels absolutely fine. She is a little slower than normal but she is good. We are both also feeling positive about how things are going and are confident that Riley is going to get through all these hurdles. She has completed her first surgery; that is big! There is still so much more to get through but we are glad she has passed this first milestone.
Everybody on Med/Surg is thinking about you and keeping up to date with this blog and Facebook. There are more people thinking and talking about you then you are aware. I personally follow this blog every night.
ReplyDeleteThanks for the update. We continue to pray for and think of you guys! Sounds like Riley is a strong little one. So glad to hear that you guys are doing so well! Hugs and Blessings from the United States :)
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