TCH Visit

Seth and I woke up early on Thursday to start our day long visit with Texas Children's Hospital. I forget how bad traffic can be and I ran as fast as I could to my appointment which happened to be on the 20th floor. While Seth parked the car I got signed in. I immediately noticed all the kids in the room with patient wrist bands that matched mine. I got a little curious and began to tear up. Luckily, Seth came up the elevator and was there to hide me. We were called back to see Nancy Ayres to do my fetal echocardiogram. Once again we were told things that we have never heard before. Sometimes I wonder if we are simply just blocking things out. Dr. Ayres is amazing and I wish we would have seen her since the very beginning.

The picture above shows what an HLHS heart looks like. I try to make it easy for you all to understand. I added an X over the atrial septal defect because this is still a concern for us. Normally blood is flowing from right to left but in our baby the blood is flowing from left to right through this defect. You can see the arrows that show the blood flow. I also placed an O over the aorta. Dr. Ayres said that normally an aorta is 10-12 millimeters but in our baby it is only measuring 2 mm. (I can't remember if they said centimeters or millimeters. I am pretty sure it is mm.) These are two more obstacles in our way and we left the appointment, once again, upset and confused.

After the visit with Dr. Ayres we met with the neonatology team. We met with Dr. Moise and she informed us of what will happen once we deliver. She explained to us that once Dr. Kirshon delivers the baby they take him away and stabilize him. They do what the cardiac surgeons ask them to do. They will most likely place an IV or two through his umbilical cord to start administering medicine. They will check him physically and make sure that nothing else seems to be a problem. The neonatology team is only there to stabilize the baby and once they do that then they turn him over to the cardiac team. The cardiologist then will check the baby and see what interventions need to be done. When we were first told about HLHS they said that the baby usually has open heart surgery around the 5th day of life. We were informed that because of his narrow atrial septal defect that he may have to go have a heart catherization immediately after birth. They would widen this defect by placing a balloon there. They also informed us that he may have his open heart surgery within 24 hours of delivery. The doctors informed us that all of this won't be decided until his birth. It will depend on his oxygen saturation levels.

After the neonatology visit we met with the cardiac surgeon. Dr. McKenzie said they TCH performs this surgery about 20 times per year. The Texas Children's Hospital has a great success rate compared to other hospitals in the country. They have an 88% success rate which is about 8% higher than we were told in the beginning. This is comforting news to us. We were also informed that I will be induced on August 1st or 2nd. I am not a fan of inducing but there are many advantages in our circumstance. I am just worried about having a C-section but they assured me that that was the last thing they want. A vaginal birth helps clear fluid from the baby's lungs so that is what we want. It will help the baby breath easier after birth. The neonatology team, cardiac team and OB team will all be informed about my delivery. They will all be present and accounted for rather than going into labor on my own and waiting for the team to drive into town and get ready. They also informed us that by delivering on a Monday has its advantages. All of the teams are fully staffed Monday-Friday so that our baby will have at least 5 days with the full team before the weekend. This made Seth and I feel much better. We are praying for a successful and easy delivery.

Throughout our day we were placed with a fetal cardiac coordinator, Carmen Watrin. She has been with TCH for 25 years and has been in the cardiac center for 15 years. She is our personal "go-to-person" throughout this process. She is the person that guides us through this process. She will place us at The Ronald McDonald house on days that we need it, she comes with us to all of our appointments, she coordinates the delivery with all of the doctors and she even will be my personal informant after I deliver the baby and he is taken away. She is truly fantastic and I am so glad that she is good at her job.

After delivery I will be stay at St. Luke's to recover. Once I feel good enough to get up and into a wheel chair they will let me go see the baby at TCH. (The hospitals are attached.) Seth will go with the baby immediately after delivery and stay with him. He will take a few breaks to come see me but they want someone with the baby for at least 6 hours after the delivery. I will recover in the hospital for 2 nights then I will be discharged. Our baby will get his first surgery sometime that week and he will be put back into the cardiac ICU. Once the baby is well enough he will go to the cardiac acute care center. The acute care center (ACC) is great. We get a private room with our baby and we can sleep there. This is a great advantage for us.

At TCH they have a milk bank as well. They have pumps for you and they mark and freeze your milk until you go home. This was one thing I was worried about. I am very happy with the facility and the way they take care of you. One of the downsides of the hospital is that you have to pay $13 a day to park. We are thinking about getting a month pass because it will get really expensive. When we stay at the Ronald McDonald House the parking is free.

I can't think of anything else that we were told. It was a very long and exhausting day for the both of us. We pray and hope for the best.