Our Little Princess: Surgery Update

May 21

Today is another big day! Today baby Hannah would have her first major surgery, the Norwood Procedure (I’ll explain this later in the blog). Kelli and I woke up early after a restless night of sleep. They told us to be at the hospital by 6:45 AM so we could send her off properly. When we arrived they asked if we wanted to hold her. Kelli, crying, smiled and sat down to hold her. She was able to hold her for a few minutes before they had to put here in the isolate that they would use to transport her down to the OR. Kelli, of course, lost it when they took her baby “away”.  It was difficult to send her off, but I guess it is kind of like a mission. You send your kid away knowing that when he or she comes back they will be a changed person. Our only concern was whether or not she would come back.  

After we dropped her off they took us upstairs to the waiting room. We sat down around 7:30 AM. We were the first people to arrive that morning in the waiting area. They told us that a family nurse would come around every hour to give us updates. We weren’t expecting the first update until 9 AM or so. We started to get nervous around 9:30 when no one had given us an update. About a half hour later the nurse came around and told us that everything was right on schedule.  Over the next 3 hours the nurse did show up every hour as promised. The next two updates were similar to the first, everything right on schedule and going well.

The 4^th update around 1 PM they told us that they were coming down off of the bypass machine and they would see how she would hold out on her own.  The bypass machine or ECMO (ExtraCorporeal Membrane Oxygenation) which takes the blood out of her body, runs it through a machine which purifies and oxygenates the blood, warms it back up, and then returns it to her body. The blood flowing through her body in on a continuous circuit. During surgery they increase the rate at which the blood is flowing through the machine so the heart actually stops pumping blood because the machine is maintaining the blood pressure the body needs to stay alive. As they decrease the blood flow, the body compensates and the heart starts to pump again. Pretty amazing. 

Two hours after turning off the bypass machine and seeing how she would do on her own they decided to put her back on the machine.  She was having trouble getting enough blood to her lungs due to Pulmonary Hypertension (the blood vessels in her lungs are too small to provide enough oxygenated blood to the rest of the body). Around 3 PM we went and talked with Dr. Brown, her surgeon, and one of the pioneers of the Norwood Procedure. He said he was very happy with how her heart was working mechanically and was pleased with how the surgery went. He said that they would like to err on the side of caution and keep her on the ECMO machine for the next few days until she is fully ready to support herself on her own. He also showed us a shunt similar to the one that was placed in her heart, which will be her lifeline for the next few months until they do the next procedure.

After speaking with him we went to another waiting room to wait for baby Hannah to get settled into her new room. Around 5:30 PM a nurse came and got us and asked if we were ready to go back. After a very long 10 hours we finally got to go back and see our baby girl. I was really nervous how I would respond to seeing Hannah attached to a 15 (literally) IV lines and seeing her blood pumping through an external machine. I was kind of freaking out. Once we got back in the room though I realized that it wasn’t as bad as I had envisioned it being. It was still pretty intense with all of the machines hooked up to her. We talked to the nurses and the doctors which were present. They gave us an overview of everything she was hooked up to and why they were using this. Here is a view of the room.

It was a very overwhelming trying to take it all in. Amazing Hannah was stable and through surgery #1!!

I know a number of you have asked what our baby has and what they have done during this surgery here is a great and simple Youtube video which explains everything much better than I can via blog.

Here is another clip of a girl who has Hypoplastic Left Heart and how she has lived her life.  From her little video it appears that she was able to live a very normal life, she just had to understand her limits. This is very comforting to us and helps us better understand what Hannah’s life could be like.

May 22

The day after surgery was a very quiet day. Hannah was still hooked up to the ECMO machine and had a little army of nurses watching over her. All day Wednesday they were helping her body get used to the surgery and gave her body a day to catch up.

May 23

Thursday was a big step for baby Hannah; today they decided to test her. Doctor Brown, the surgeon who did Hannah’s surgery showed up and decided to see if Hannah was ready to come off the ECMO machine. They would do these tests by turning down the circuit, or the amount of blood that would be flowing through the ECMO machine. As they would turn it down they would hold her there for a couple of minutes to see how her vitals looked. When they make these adjustments the changes are immediate because it instantly changes the blood pressure and the amount of help she is receiving from “The Machine”. The doctor continued to turn it down until the machine was almost at an idle. The doctor was very happy with where she was at and decided to leave the machine on a low circuit volume for a couple of hours and see how she looked. At the end of that time period if her vitals were looking good they would take her off the machine. While they were doing this testing, it just so happened that the doctors and nurses were also doing their daily rounds. Kelli and I both counted to see how many doctors, nurses, and other staff cared about our little Hannah, and we both came up with 16 people in our little room. It felt kind of cool having a room packed full of people all concern about our little baby.

Kelli and I left the hospital to go spend the day with Jack and the Children’s Museum. We hadn’t seen Jack for a couple of days and were so excited spend the day with him. When we got there and Kelli saw Jack she was miraculously healed. She jogged over to him and picked him up and gave him a hug. The rest of the day she rode around in a wheel chair. We had an awesome time playing at the world’s largest Children’s museum. Jack loved the trains, the sand pit, and the carousel. I loved the Hot Wheels exhibit; Kelli and Mom enjoyed the Doll House exhibit and we all enjoyed just being together as a family.   Here are a couple of pictures of our day.

 He loved the big trains

 Hot-wheels tracks

While at the museum we got a call from the hospital telling us that she had been stable for the last 4 or 5 hours and they were planning on taking her off the ECMO machine. YAY! This is a big step forward for Hannah as her heart will now be able to do what it is supposed to do, pump blood. We thought Hannah would need to be on ECMO for another day or so, but she was ready today.  They did the procedure at her bedside. We weren’t allowed to be in the room during this procedure (not that I wanted to) so we enjoyed that time away from the hospital with Jack. An hour or so later they called us back telling us that she was officially off the machine as doing well! She is still on the breathing tube which is still doing the breathing for her. Over the next couple of days they will be weaning her off of this machine until she can breathe with just the nasal cannulas or the vapotherm system she was on in the NICU.

They also told us that they will be closing her sternum tomorrow! They have kept her chest bone open to try and reduce the pressure placed on the baby’s heart from all of the post-surgery swelling that takes place. We will provide an update as to how that went tomorrow.

It has been a busy day for Hannah but she has been handling the changes really well. We are so grateful for all the prayers and support; we couldn’t have made it through this week without it.  Thank you everyone so much!