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.

Flight to Utah

Ephriam packing

Our flight to Utah was one of those trips that every parent hopes for and I am sure so many parents have endured. It was miserable, but quite hilarious in retrospect. : ) We had 3 seats for my husband and I and our 2 kids (2 and a half and 1 and a half years old). Our youngest, Ephriam, is a lap child and we thought we would bring Johnny's upright car seat for him because of his wiggly stage and then have Johnny sit between Sam and me. Our scheduled flights were from Fairbanks to Seattle and then Seattle to Salt Lake City. Our flight left Fairbanks at 1:20am, February 15th. We thought this would be great because the kids would be so tired that they would sleep the whole way! Right?!?! Wrong! It was probably the most turbulent flight I have ever been on, which does not bother me too much. I even thought to myself, "This is really a rough ride. If I didn't have such a strong stomach, I would probably throw up." Then Johnny started complaining about how his "tummy" hurt. I thought to myself again, "I wonder if he feels like throwing up." Apparently I didn't voice that to Sam, but I thought it. The next thing you know, Johnny lost all of his snacks that we had fed him before boarding the plane. Luckily, everything landed right on the pillow that was on Sam's lap. 

Johnny all ready to go!

Epriam's Plane Ride Expression

Then came bed time. Ephriam would not sleep in the car seat, so we put Johnny in it and he finally went to sleep after about an hour into our flight and after throwing up. Ephriam, on the other hand, squealed and screamed and would not sit or lay still. We even created a bed of pillows, coats, and blankets for him on the floor. It was obvious that he was past the point of exhaustion. Every time he would somewhat fall asleep, the plane would shake so violently that he would then be wide awake again, screaming. Fortunately, they put all of the families in the back of the plane and next to each other. So when Ephriam stopped screaming, one of the children behind us began. It really was beautiful how coordinated they were in trading off on screaming. Ephriam finally fell asleep the last half hour of the flight and so did we. We then switched planes in Seattle and there was not chance of us getting any sleep on our next flight because of the daylight. I know maybe I should have felt bad about my child screaming, but I didn't. I figured that everyone endures a horrible flight at least once, whether you are the one experiencing it or your child is causing it. In our case, it was both.

Miracles Before Leaving Alaska

Part of the purpose of this blog is for my husband and I to also document all of the miracles throughout our journey. There was a great miracle that we received news of at our last cardiology appointment. We had one last appointment at the beginning January with our Pediatric Cardiologist in Anchorage before we left Alaska. He wanted us to schedule our appointment around a sonographer that would be visiting from Seattle Children's Hospital. This sonographer specializes in Fetal Echocardiograms and the ultrasound machine settings are changed to capture more detailed images of the heart. I sat through about an hour of an ultrasound where the sonographer took all the necessary images and measurements of our baby's heart. Something miraculous that the cardiologist and the sonographer discovered was that there was no significant narrowing of the major arteries, which is almost guaranteed with his diagnosis. Narrowing of the arteries also causes a decrease in oxygenated blood flow and to correct that, the surgeons place a stent in them to keep them open. These need to be replaced as the child grows until the heart reaches full maturity. So typically, this increases the amount of surgeries, possibly having multiple within their first year of life. We knew that him not having this narrowing is an answer to prayers.

Insurance was another obstacle we had to overcome. We had made plans for Utah after our last appointment because insurance had said we were approved to be there so long as we had the proper documentation in order. Long story short, it was very difficult for them to approve our medical coverage and travel to Utah. After a month of waiting, phone calls, a medical letter from our cardiologist, enrollment of insurance for hospitals and physicians, and conflicting answers, we finally received approval for travel and care in Salt Lake City 9 days before we left. Many miracles occurred through all of this. We are also grateful to our OBGYN's secretaries who patiently called and worked with the insurance.  There was also a foundation that helped to cover one of our son's plane tickets that was not covered by insurance. We feel so blessed and thankful that everything worked out for us to be here in Utah. It would have been difficult for us to have the help available to us anywhere else.

Background of our Baby's Heart Condition

I am creating this blog to keep all of our family and friends informed on the status of our baby and our circumstances. It is also for those who would like to know how to pray and fast for us. We are already so grateful for the love, prayers and fasting that we have received in our behalf that has brought us great comfort. The Lord truly gives us opportunities through our experience to strengthen us and help us to serve and be more compassionate toward others who are going through similar circumstances. Through all of this, we have realized how blessed we are and have become more aware of the many babies that are born premature or with deformities, cancer, neurological complications, heart defects, lack of internal and external functions, and so much more. Many of these babies and their families endure long hospitalizations that bring added stress to an already difficult situation. Having a child is truly a miracle and we are so grateful for modern medicine to extend the lives of these miracle children! 


My husband and I found out I was pregnant with our third child in June of 2013! We are thrilled to be bringing another sweet baby into this world. At our 17 week appointment, we found out we were going to have another boy, for a total of three boys! At 23 weeks, the first week of November, I went in for my anatomical ultrasound. After having two different sonographers try and capture certain images of the heart, and then finally the radiologist coming in to view the images himself, I knew something wasn't right. All I was told was that there were abnormalities of the heart and that I could not deliver the baby there in Fairbanks. 

My midwife called me later that day and he told me it was a very serious condition called Transposition of the Great Arteries (TGA), where the two major arteries of the heart are switched. However, we would not know more details about his diagnosis until we met with both a Periantologist (a high risk pregnancy doctor) and a Pediatric Cardiologist (a children's heart doctor). Neither of these doctors are in the Fairbanks area, so we traveled to Anchorage for the appointments. We knew we would be in the area around Thanksgiving because we have family there, so we scheduled the appointments around that time. In the meantime, we did everything we could to research our child's condition and anxiously waited through the month to meet with the specialists. Through our research, we found out that the baby can not be born in Alaska, as the surgery requires specialized heart surgeons and a specialized Cardiac Newborn Intensive Care Unit (NICU). We also discovered that my close friend worked at an amazing children's hospital in Salt Lake City (Salt Lake Primary Children's Hospital) that treated our baby's heart condition. We knew that was where we were supposed to be and that we would also have family, friends, transportation, and so many other resources available to us there.

Our appointments came and part of the diagnosis was confirmed. However, we also found out it was more than just TGA. Our Pediatric Cardiologist told us that it was a rare 3 part heart defect called Taussing-Bing Anomaly (named after two doctors). The three parts include a Transposition of the Great Arteries (TGA), a Double Outlet Right Ventricle (DORV), and a Sub-pulmonary Ventricle Septal Defect (VSD), which means the major arteries are switched and coming out of the wrong side of the heart, along with a hole between the lower chambers of the heart. Our research started all over again. There are only about 20-60 cases of Taussing-Bing in the United States each year. As with most heart defects, oxygen is not properly supplied to the baby and therefore, the baby will suffocate. This is one of many heart conditions that cause a “blue baby” when born and also causes death if not treated immediately. 

The baby will require a temporary procedure right after birth and then open heart surgery within the first week of life. Although this anomaly was discovered in 1949, a fairly promising surgery of the repair of the anomaly was not successfully achieved until the mid-90's. However, management of the Taussig-Bing anomaly remains challenging. Because the heart is the control center for so many functions of the body, it can create or cause further complications throughout life, as well as multiple heart surgeries. Although we recognize this to be the case, my husband and I have learned to always hope for the best and be grateful for the moments we have in our lives with one another.

Normal Heart vs. Taussing-Bing Heart
http://www.rch.org.au/cardiology/heart_defects/Double_Outlet_Right_Ventricle/