Friday, September 16th. We woke up early and got to the hospital by 07:00 so that we’d get some time with Laura before anesthesiology came to get her for surgery. We were there when they did their cardiac rounds and got the official word that she would be the first case (surgery) of the day. We got to talk to her and tell her stories before the anesthesiologist came to talk us through what surgery would look like. She came in with a scrub dress on and a colourful scrub cap and she was the absolute loveliest woman. She told us that Laura looked like a princess and she spoke to Laura like a real person – a trait not many in the NICU shared. Our first impressions of this doctor- Dr. Paula- were amazing and later in our journey she became even more important to us. She told us that they would take her into the operating room and start getting IV’s, central lines, arterial lines, and atrial lines set up, get her sedated and get her intubated and ready for the surgery. She told us to add 2 hours to whatever we were told the wait time would be and that she would take good care of our little girl.
About an hour later, Dr. Paula returned and it was time for Laura to be taken to the OR. We were allowed to walk her there and say our goodbyes – this was so tough. When you watch the doors to the surgical suite close all you feel is emptiness and fear. My husband and I stood there for a couple of minutes and then headed back to the waiting room where my parents were waiting. We went to eat breakfast although I was really not hungry – but it helped to pass the time. We ate, walked around and then headed back to the waiting room where the surgeon said he would find us after the surgery. Hours passed and we had no word. The more time that went by the more nervous we became.
Finally, after about six and a half hours, the surgeon came out to speak to us. He said that the surgery went relatively well and that he was able to do what he intended. He also told us that Laura’s coronary arteries were even worse than he expected and that rather than being able to move them separately, he had to move them as one entity which is risky. He felt cautiously optimistic that everything would work out but was going to put her on ECMO alert for 24 hours (more about ECMO later). This meant that they would have a surgeon on call for 24 hours just in case Laura got into trouble and needed to be put on ECMO life support. We didn’t really know what ECMO was so we just brushed it off as something she probably wouldn’t need. It would be another couple of hours before we could see her in the Pediatric Cardiac Intensive Care Unit (PCICU).
We were able to go see Laura as she was wheeled down the corridor to the PCICU and rather than feeling afraid for the state she appeared to be in, I was just relieved that she had made it through surgery. A little while later we were able to go see her in the large open space that was the PCICU – she was in the first bed as you entered so it was pretty easy to spot her. When we went in the first feeling is shock –
this tiny baby was covered in lines and tubes and you could hardly see the baby underneath it all.
On top of that her sternum was still open so there was the knowledge that there was nothing but skin protecting her heart. We met our nurse and she explained what everything was: the mediastinal chest tube to drain blood from her middle chest cavity, the Jaxon Pratt(JP) chest tube with the little bulb on the end to drain blood from around her lungs, the arterial line that gave a constant blood pressure reading, the Left Atrial (LA) line that measured the pressures in her left ventricle, the Central Venous (CV) line that measured the pressures in the right side of her heart, the pacing wires that were hooked up to an external pacemaker just in case, the Internal Jugular (IJ) line that supplied her heart with medications almost instantly, the umbilical (UVC) line that she had before the surgery, the peripheral lines in her foot and hand, the Naso-Gastric (NG) tube in her nose to supply her with nutrition, and finally the Endotracheal (Breathing tube) tube that was doing all of her breathing for her with the help of the ventilator. All of these things were sticking into and out of my daughter after her surgery. It’s pretty overwhelming and I certainly didn’t remember many of these terms the first time they were told to me but thankfully the nursing staff were very forgiving of some memory lapse in these situations!
We were also re-introduced to the world of monitoring. When in the NICU, Laura had been hooked up to one IV in her belly button, a sat monitor which told us her oxygen saturation and heart rate monitors. Now we were looking at the screen wondering what we were looking at. On it we saw numbers which represented her respiratory rate, heart rate, LA(left atrial) pressures, CV (central venous)pressures, blood pressure, End tidal monitoring her CO2 output and finally her oxygen saturations. The biggest change was that her oxygen saturation was 100 when we came into the PCICU! It had never been that high in her whole life and it was nice to know that her body was getting the oxygen that it needed!
The one last thing we were introduced to was her medications. She was on pain relief medication and sedation medication (morphine and midazolam), as well as medication to help her heart (epinephrine and milrinone). These medications were very important as her heart would need time to recover from such a major surgery.
Over the course of the next few days medications were taken away and we were able to say goodbye to pacing wires, the LA line, chest tubes and one of her IVs. It was so nice to start to see that beautiful little baby again! A couple days after surgery she was also able to have her sternum closed as the swelling from surgery had gone down and she was believed to be out of the woods so to speak. After her chest was closed the breathing tube came out! This is an excellent day because it means you can hold your baby again! Laura did very well the day the breathing tube came out and after dinner, we headed back to the apartment for some rest thinking the worst was behind us and that we’d be coming home soon.
When we arrived at the hospital the next morning, Laura had a giant mask on her face! It turns out it was CPAP (Continuous Positive Airway Pressure) because her left lung had collapsed. CPAP delivers a constant stream of air which was meant to help get her lung to pop back up. The x-ray from that morning showed not only a collapsed left lung but also that the left side of her diaphragm looked very high. With the bad comes the good and we found out that we would be transferred back to the NICU later that day – good news because it’s a bit more spacious and we were allowed more visitors at a time. It’s also good news because the NICU takes slightly less acute patients so this meant we were well on the road to recovery.
Once we arrived back in the NICU we had an ultrasound done of Laura’s left hemi-diaphragm which showed that it was paralyzed and moving paradoxically which basically means that it was moving in the opposite direction that it should. This causes problems with the lungs because with every breath, Laura’s diaphragm, rather than moving out of the way for the lung to expand, was compressing the lung. Unfortunately, this is a reasonably common side effect of cardiothoracic surgery in infants as the chest cavity is very small and the phrenic nerve that controls diaphragm movement is very close to the heart. The hope was that her lung would re-inflate (this isn’t really what it’s called but it’s basically what’s happening…technically it is called re-recruiting) in time and we could ignore the damaged diaphragm to a certain extent.
The next number of days went by rather uneventfully – Laura remained on CPAP but all of her IVs were removed and she was able to wear a sleeper for the first time in her life! We held her lots and stayed at the hospital for hours and hours because we were so excited to be able to care for Laura – changing a diaper was not supposed to be as exciting as it became after a week and a half of having someone else do it.