On September 16, 2013 we went to Millcreek Imaging for our 25 week anatomy ultrasound of our 2nd baby. We were so excited to confirm what we thought; it was a girl this time! The ultra sound tech didn’t give any sign that something was wrong, so we left that office high as kites. September 20th, we went to our OB for a regular check up. This was the same doctor we had with our son. We had a good relationship with him. He walks in and looks at the computer and says “Oh, she has a VSD.” I had no idea what that was! I was in a hurry to get my blood drawn for my glucose test so I didn’t have time to ask questions. John stayed with Dr. Y and asked more about what a VSD was. A Ventricular Septal Defect. Basically, a hole in her septal wall between her left and right ventricles. He told us this was a common heart defect but that he would schedule us a fetal echocardiogram at Primary Children’s Hospital.
A few weeks later, I was laying on a table having a very detailed ultrasound down on my unborn baby’s heart. After about 45 minutes, where the ultrasound tech barely spoke a word to me, we were led to a small room and waited on the couch for a cardiologist to come tell us about what they saw. She walked in wearing high heels and perfect hair, not what I thought a cardiologist would look like. She showed us a diagram of the heart and what our daughter’s defect was like. She said most VSDs are small and don’t cause problems, but because of the size of hers, our daughter would more than likely require surgery after birth. Our game plan was to stay with our same OB and after she was born they would do some tests and come up with another game plan. We spent the rest of our pregnancy wondering what would happen. We had another detailed ultrasound to check on her weight gain. She was almost 2 pounds smaller than her brother, but still measuring good, especially for a “heart baby”.
On December 23rd, we were induced at 39 weeks. She was born at 2:11 pm and weighed 7 pounds 11ounces and 19 inches long. That’s a great size for a heart kid! The pediatrician on call couldn’t hear a heart murmur so they sent us home less than 24 hours after she was born. We were told to follow up with our pediatrician and cardiology from Primary Children’s Hospital. 4 days later we saw our pediatrician and when they checked her out they couldn’t hear anything wrong and her pulse oximetry numbers were great. Our doctor scheduled an echocardiogram in 2 weeks and we would get to see her heart and what we were dealing with.
Ally spent the next 2 weeks sleeping a lot, not eating and when she did she threw it up, and chronic constipation. Looking back, I see all the signs of heart failure.When we met Dr. Jou he assured us things would be ok. They were able to see a large VSD that they hoped would shrink, but was looking at open heart surgery before she turned 1. They also saw a moderate ASD, Atrial Septral Defect, a hole in the septal wall between her left and right atriums, but they hoped that would close as well. We were told to come back in 6 weeks for a weight check and EKG. At the next appointment Ally was put on fortified formula because she wasn’t gaining any weight at all. In March, less that 3 months after birth, I called Dr. Jou about having an echocardiogram done on our son to rule out heart issues, although he has no signs of any. Dr. Jou asked how Ally was doing. She was scheduled for a check up in a few days. During the phone call he decided she needed to be seen ASAP and have a sedated 3D echocardiogram done. So the next day we made the trip to Primarys and watched them put an IV in our baby and had several doctors in and out of the ultra sound room while they looked and analyzed her heart. This is when we met Dr. Gray. He came with a crudely drawn picture of the heart and said they needed to operate now. She had been losing weight and her heart wasn’t functioning. Surgery was scheduled for 6 days later.
The plan was to have Dr. Eckhauser open her chest and breast bone and make an incision in the side of her heart, then Dr. Gray would use a catheter to deploy a device that would fill her VSD. Then Dr. Eckhauser would wire her chest back together and close her chest. She wouldn’t require going on the heart and lung bypass machine. This is the machine that pumps blood for the body while the heart is stopped during open heart surgeries. This type of surgery had only been done on 6 other kids at PCH and 40 nation wide. It was very experimental and Dr. Gray was in charge of a research project hoping to make more open heart surgeries done without using bypass. If they weren’t able to deploy the device with the catheter, Dr. Eckhauser would step in and close the holes, this would require bypass and add more time to her surgery.
On March 31, 2014 we went to PCH and had blood labs drawn, a chest x ray, and a meeting with our doctors. We took Alexandria home and gave her a bath. We played with her brother and spent time together. The next morning, April 1, we woke up at 4:30 am and checked in at same day surgery at 6 am. After dressing her in a hospital gown, we were lead to the Operating Room waiting room. We were able to find a secluded area that was curtained off. Ally loves music, especially Frank Sinatra and Bing Crosby. So we turned on Pandora and cuddled together. She fell asleep. She was such a trooper for not being able to eat since Midnight. We met Dr. Eckhauser who went over all the risks, like death. At that point I wanted to turn and run. We also met her anesthesiologist, Dr. Evans. We filled out some paperwork and they led us to the OR double doors. We handed our sleeping 3 month old to Dr. Evans and said see ya later at 7:48 AM. Another doctor gave us a pager and said they’d update us as the surgery went on. We turned and went to the surgery waiting room. I set up camp in a corner with my head phones and John went to the cafeteria to get breakfast for us. At 8:42 we got a call that the wires were in and she was doing well. At 10 AM we saw Dr. Gray walk in with a plastic bag. He had the biggest grin. He told us the surgery had been a success. The hole was much larger than they thought and in a difficult place to get to with a catheter, which is why by pass was on standby. But he was able to do it! Soon after that Dr. Eckhauser came to update us. He was all dressed and ready to go home. He said things looked good and we’d be able to see her soon. Her surgery had been less than 3 hours when we had been told 6 at least!
When we got to the Cardiac ICU she had already had her breathing tube taken out, a big deal for heart surgery. She had pink lips and cheeks already. The CICU nurses were surprised at how well she was already doing. We went home for a few hours and then I went back to check on her. Having one on one care in the CICU is so nice and reassuring. John’s sister who is a nurse practioner and had worked in cardio thoracic surgery before had been with us throughout the day. She was able to talk to the nurses and explain things to us. She was so pleased with her recovery as well. The next day at rounds in the morning they told us she could move upstairs to the surgical floor. This was a huge step in us going home. We saw Dr. Eckhauser for a few minutes as we moved upstairs. We spent 2 uneventful nights there. They did x-rays and echocardiograms to check her heart function and the placement of the device. They told us that they found another small VSD next to the large one, as well as she had a Bicuspid Aortic Valve, which means her Aortic Valve only has 2 leaflets instead of 3 so she has leakage as her heart pumps blood to the rest of her body. This is something that will have to be replaced and monitored throughout her life.
On April 4th we were discharged home. She was still on Lasix medication and now would be wearing Oxygen 24/7. We would need to come back in 2 weeks to get her stitches out and an echocardiogram again. We were hopeful that she would come off oxygen, but they told us she still needed it at night. We went back at 6 weeks post op and she got to say goodbye to her oxygen! They told us we didn’t need to come back for 6 months after that! We were so excited! But around 4 months I started to worry. She had a chronic cough and still had chronic constipation. So we bumped up our appointment and did another sedated echocardiogram. Dr. Gray assured us that things were ok and to come back in 6 months. This put us at the 1 year post surgery mark.
In March 2015, they did an x-ray and EKG and things looked great. We were off all medications and put on the annual cardiology appointment plan! I couldn’t believe it. Since then we have had many follow ups with our pediatrician. Ally’s immune system is very weak. She gets sick very easily and even the minor common cold takes her double the time to get over it. We are approaching the 2 year anniversary of her surgery. We are doing an echocardiogram and I’m nervous what they’ll see. She still struggles with constipation and a sensitive gag reflex. We’ve been very blessed to make many friends along this journey who help us along the way. We feel very lucky that our journey has gone as smooth as it has.
Whitney, thank you so much for sharing your adorable Alexandria Jo! She’s so cute and such a trooper. I just love these heart kids!