The surgeon said the surgery would take 3-4 hours and that a nurse would call us every now and then with updates. We waited anxiously in the waiting room for any kind of information on how the surgery was going. When Jemma was still in surgery after six hours I started to really worry that something was wrong, even though we had heard from the nurse that she was doing okay. Finally after seven hours of waiting we got the news that they were closing up Jemma's chest and that everything went well.
Her surgeon, Dr. Eckhouser, met us in a consultation room and explained that the reason Jemma's surgery took so long was because they found some things that they were not expecting. Most people have one "superior vena cava" vein that carries deoxygenated blood from the upper part of the body to the right atrium. Jemma for some reason has two vena cavas. She has one on the right and one on the left that was carrying extra blood into the left atrium (not good). Basically Dr. Eckhouser had to "baffle" or move this vein so that it would pump blood into the right place.
The next thing they didn't expect was the hole in Jemma's heart was way larger than they expected and her tissue surrounding it was abnormally thick and difficult to deal with. Due to these unexpected "plumbing" issues Jemma's surgery took twice as long. This also meant that she was on the bypass machine (this machine does the job of her heart and lungs during surgery) for twice as long. Because of being on bypass for so long Jemma produce triple the amount of water than a normal baby would and caused the surgeons to place extra drain tubes in her. On the bright side, Dr. Eckhouser was able to only cut along Jemma's pulminary artery and valve to widen it instead of having to place an artificial patch right now. This means that Jemma will only need one more surgery to fix her heart and the doctors said that hopefully that wouldn't need to happen until she is in her twenties if her valve which was cut across doesn't leak to much... fingers crossed!!!
After talking tot he doctor we were able to see Jemma. It was so hard seeing her hooked up to so many things and I held back tears as I held her tiny hand. While Dan and I were sitting by her we started to notice that her left side was twitching in rhythm. The rhythm became more pronounced and it became clear she was having a seizure or something. The doctors quickly told the nurses to give her some medicine to stop the seizure.
I have never felt more helpless in my entire life as I watched the nurses hurry to follow the doctors orders. Pretty soon there were several doctors surrounding Jemma trying to decide why this was happening and whether it was a stroke or seizure. On the outside I held back the tears while I talked with them but on the inside I was dying and felt like screaming for someone to help my baby. The neurologist decided to do a EEG to measure the electrical activity in Jemma's brain that night. I knew I couldn't hold my tears any longer and excused myself to go to the bathroom. As soon as I shut the doors to the private bathroom I sat on the floor and bawled like a baby. I was so scared that my sweet Jemma was never going to be the same.
Through all of this I looked to Dan for comfort and strength. I will always remember looking across Jemma as she was seizing to see Dan gently holding her hand and looking so calm. He told me that he was freaking out on the inside but always knew she would be okay. I really married an amazing man!
After that initial dose of medicine Jemma didn't seize again. The EEG showed that on the right lower side of her brain she has a focused spot of electrical activity that if triggered could result in seizure activity. A lot of people have this though and never have a seizure The neurologist were not sure if this resulted from the surgery or not. There is also a chance that it was a mini stroke because for awhile afterwards Jemma's left side was a little slower than her right. Jemma will stay on a low dose of anti-seizure medicine until she has a MRI in a few weeks. The neurologist are hopeful that we will be able to wean Jemma off of the medicine in the next couple of months but it really depends on what the MRI shows. Even if it was a mini stoke the neurologist are not very concerned because she is so young and her brain will simply rewire itself if any damage occurred. They did a CT scan while all of this was going on and Jemma definitely does not have Dandy Walker Malformation. All they found was a posterior fossa cyst and a lot of the population have this so that is great news!!!
When you are trying to stop a seizure you initially give a large dose of medicine and then go down to a normal dose. This "loading" dose tends to knock people out for a few days so Jemma really didn't "wake up" for several days. During the days where she seemed so out of it I worried that some permanent damage had been done during her seizure. I had been spending every second at the hospital except for a hour when Dan and I would go home to see Maizie and put her to bed. I was about to go back to the hospital for the night when Dan and I decided to say a prayer together that Jemma would still be her same happy self. That night when I got back to her room Jemma woke up and instantly smiled. She then continued to smile at my mom and sisters who were with me for the next half hour. I know without a doubt that Heavenly Father heard our prayer. It truly was a tender mercy.
The next couple of days consisted of hardly any sleep for me as a stayed by Jemma's side. Jemma had a hard time maintaining her oxygen by herself because of all the extra fluid she produced during surgery. Her lungs had a lot of fluid in them so she was on three different diarrheatics to try and get rid of the water. Once she switched from IV medicine to oral they said we could go home. Every morning she had a chest ex ray to check her lungs and one week after coming in for surgery they said her lungs looked good enough for us to go home. All the nurses and doctors were sad to see her go because she constantly smiled and laughed at everyone. Every person who met her said they had never seen a happier baby. She still has fluid in her lungs though and instead of seeing her again in three weeks we are going back this coming Wednesday to check her lungs again.
It was really hard being at the hospital so much and I missed my crazy little Maizie. Thank you everyone who helped us with Maizie during this time. She had so much fun at everyone's houses and we feel so blessed to have family and friends who love us.
The hardest part now is keeping Jemma safe and healthy while she heals. Maizie loves her so much and just wants to squeeze her... not a good idea right now. Dan and I love our two little sweethearts so much!!!
During this whole experience my emotions have been all over the place. I have had moments of complete panic and moments of total awe as I have seen Heavenly Fathers hand. Jemma's surgery did not go entirely as we hoped but I know everything happens for a reason and I am just so thankful that Jemma is my same happy little baby. I know that Jemma came into our family for a reason and I believe that reason is to remind me and Dan that Heavenly Father has a plan for all of us and despite challenges we can still be happy... just like Jemma!
They had to wrap her head to keep the electrodes on for the EEG
Right after surgery
This is Jemma right after she woke up... such a happy baby!
Maizie was so excited to see Jemma! Every morning she asked Dan if she could see Jemma!
Jemma making me laugh!
Some Jazz players came to the hospital and gave Jemma a ball.
Loves her daddy!
