Last of Appointments and Expectations of Treatment

Tuesday, February 18^th

On Tuesday of last week, we spent most of our day at doctor’s appointments. We first had an appointment with the ultrasound clinic at the hospital for a general anatomical ultrasound of the baby. We then went downstairs to meet with the periantologist, the doctor that will be delivering our baby. Everyone who we had talked to said she was really knowledgeable and very kind. Everyone was right. She explained how everything would work once the baby was born. She also asked us our preference for delivery because it did not matter when I went into labor. She said they have a full team of necessary specialists on call 24/7 to attend to the baby. So we decided we would wait to see if I went into labor on my own and if I didn't, then I would be induced the day after my due date. I am due on March 2^nd and my scheduled induction is March 3^rd. We are praying the baby comes on his own. But if he doesn't come on his own, we decided that it would be better for me to be induced because of the fact that the longer the baby takes to come, the longer we will be here and we are trying to minimize that time as much as possible.

Primary Children’s Hospital does not deliver babies, so I will be delivering at the University of Utah and the baby will be transferred within a few hours to Primary Children’s that is connected by a sky bridge. I will deliver in a room at the University of Utah that has a large window where they pass the baby through to the NICU (Neonatal Intensive Care Unit). The baby will receive the necessary temporary procedures to keep him stable for the next 3 to 7 days before his surgery. He will then be transferred over to the cardiac NICU at Primary Children’s Hospital. I will be able to nurse him those days before the surgery as much as he has strength for and then the rest will be given to him through a feeding tube. After the surgery, he will be fed through a feeding tube.

Friday, February 21^st

Waiting for the Cardiac Sonographer

Friday we had all our appointments with the cardiology side at Primary Children’s Hospital. This hospital is a renown heart care facility and it has the top specialists of all kinds. We first met with the cardiac sonographer, who took images and measurements of the heart. After that, they brought us into a room with couches where we met with two of the pediatric cardiologists, the fetal heart coordinator, and the cardiology social worker. Both of the cardiologists were very knowledgeable, friendly and optimistic. The cardiologists explained the procedure of the surgery and what they anticipate to happen. There are some unknowns, including where the coronary arteries are located on the major arteries and how many there are (there are only suppose to be two, but with heart defects, there are often abnormalities in the amount there are), which can complicate the surgery further. These coronary arteries are the thickness of 2mm, the same thickness of pencil lead, and can not be seen in the ultrasounds now because of the multiple layers of skin they have to look through. If they can not find them on a typical echocardiogram of the baby after birth, then they will put a camera catheter in him to find them so they can properly plan for the surgery. I asked them if it was a simple “arterial switch operation” (the general type of operation they will perform). They responded by telling us that these types of operations are never simple. They told us also that the 3-7 day window for operating on the baby is really only dependent on how well rested the surgeons are, as this is a complex operation, but has good possible outcomes. They then answered any questions we had about the surgery or recovery.

After sometime with the cardiologists, they brought one of the surgeons in to explain all of the possible risks and complications. It was  interesting to realize the difference between the cardiologists and surgeons. The cardiologists draw the map and the surgeons just read it or follow it. The surgeon told us he had never operated on a Taussing-Bing baby (there are only 5 in a million babies born with this diagnosis), nor his co-surgeon, but that the operation they would be performing is similar to that of patients with Transposition of the Great Arteries (TGA). There have been 25 patients in the last two years with this type of surgery and only 1 death. He listed off about 20 or more of the possible things that could go wrong, from damaging or cutting valves to infections during recovery. However, all of these risks or complications have low percentages and most are fixable, but because there are so many, one or more are bound to happen. The surgeon had a more matter-of-fact personality, as it is also his job to tell us of all of the worst case scenarios so that nothing comes as a surprise. One of the cardiologists tried to lighten the mood by chuckling and asked, “Any good news doctor?” Sam and I were not too concerned as we feel we are in very good hands and we had expected most of what both the cardiologists and surgeon told us. Having the Lord in our life really helps maintain a calmness as the scripture says, "Search diligently, pray always, and be believing, and all things shall work together for your good."

They also told us to expect to be here at least 6 weeks after the surgery, about 4 weeks of recovery and to stay in the area 2 weeks after discharge in case of any complications or infections. We had already planned 2 to 2 ½ months of being here because I needed to be here 2 weeks early, plus a week before the surgery, and then 6 weeks after the surgery.

The fetal heart coordinator then gave us a tour of the cardiac NICU, where the baby will be for the time before and after his surgery. Then she took us downstairs to the step-down ICU which is basically like having a personal hospital room. It was a very nice facility. She then showed us an extension of the Ronald McDonald house that is on the same floor as the step-down ICU. This has bedrooms that you can reserve to take naps and a fully stocked kitchen of food. There are also dinners provided by organizations several times a week. She said most people feel awkward about eating out of the kitchen, but that it was there for the parents to eat whenever they needed to. We were extremely impressed with the doctors, staff, facilities, and resources available to us. We are very grateful for the opportunity and blessing to be in such excellent care. Thanks again to all of the many prayers, fasting and the help that was offered in order to get us here. We are very appreciative to you and the Lord for the miracles that got us here.