Nearing the End and a Thank You to All

I want to add one more post after this one before we head home. It will be about the life of Jared Bangerter and how his story has blessed and influenced our lives. But this post includes one last update for Levi for now and a thank you to all who have served us in any way. 

Wearing hat made by his
Aunt Kristi

We had an appointment for Levi with the cardiologist this last Wednesday to check his progress. The nurse practitioner was able to pull out his feeding tube because he was gaining weight and feeding completely on his own for the day and a half preceding his appointment. We were so glad to see it go! He came off the medicine that was draining excess fluids from after his surgery, but he will continue to be on aspirin up until the 6 week mark after his surgery to avoid blood clots from forming in his coronary arteries. We were told that there is still a leak where the hole was patched up, but everything else looks great. The leak just means he needs antibiotics an hour before certain types of surgeries. But regardless, at this point, they say he should be able to do anything physical activity wise. Our cardiologist in Anchorage will continue to monitor his heart throughout his life as nothing is ever for sure, but few things in life are. We are so happy for the good news! We plan to be leaving for home in another week.

Our community just recently had a fundraiser for us that was headed up by my sister-in-

Happy to be Eating and Sleeping like
a Normal Baby!

law. I want to share what my husband posted on his Facebook in regards to this fundraiser and other service we have received throughout this time. He expressed so eloquently how we both feel. "We would like to express our deepest gratitude to all those who took the time to put this fundraiser together and for all of those who donated in any way. We have been very humbled by this experience and have been so grateful for amazing friends, family and community members who have reached out and showed their love and support, from those who have offered their time, their home, helped with babysitting, offered donations, words of encouragement, and most importantly, all of those who have been fasting and praying. We are aware that there is a very real God out there that has answered those heart felt prayers and it is nothing short of a miracle that little Levi is doing so well. I know that there is a loving God who cares about the details of our lives and that he looks down and touches our lives. There have been moments that I was unsure if our son would make it through something like this, but whether or not he did, the miracle of holding his tiny little body in my arms and knowing that the Lord had blessed us with a child, was enough. Our hearts go out to those who have dealt with this type of difficulty in their lives and all those who deal with so much more. We have seen that there are people that go through experiences far beyond what we are dealing with and they deal with it so beautifully. We know that many of you have a silent untold story of your own, that you have difficulties that others may never know about and we thank you for your prayers and thoughts in spite of your own trials. We love you and pray that the Lord will bless you all, for all you have done!"

I am so grateful for the sacrifices and service of others, but I often feel like Peter did when the Savior washed his apostles feet when it comes to allowing others to serve me. But then I am reminded of the Savior's instruction and important lesson to Peter as he washes his feet:

 “5 …He poureth water into a basin, and began to wash the disciples’ feet, and to wipe them with the towel wherewith he was girded.

 6 Then cometh he to Simon Peter: and Peter saith unto him, Lord, dost thou wash my feet?

 7 Jesus answered and said unto him, What I do thou knowest not now; but thou shalt know hereafter. 

8 Peter saith unto him, Thou needest not to wash my feet. Jesus answered him, If I wash thee not, thou hast no part with me.

9 Simon Peter saith unto him, Lord, not my feet only, but also my hands and my head.”

The Savior washes Peter's feet

I often feel like Peter did, that he should be washing the Savior's feet or serving others, not the Savior serving him. But then the Savior teaches Peter that we all have need of the Savior. The Lord often blesses us or serves us through the lives of others. By allowing others to serve us is like accepting the Savior into our lives and what He did for us, whether we have temporal or spiritual needs. Likewise, as we reject the service of others, we may be rejecting the Lord and denying the opportunity for others to be blessed from the service they would have rendered. Another scripture confirms this as it reads, "When ye are in the service of your fellow beings, ye are only in the service of your God." We really could not have gone through this experience without the help of everyone. Thank you.

Levi's Homecoming & How the Lord Continues to Connect our Lives

Levi with his Homecoming "Champ" Outfit

Levi came Home on Sunday! We were pleasantly surprised. We know it is because of the prayers of everyone. We will still be here for a couple of weeks until his follow up appointment where they will again check his repair and how his heart is functioning with the repair. We continue to pray everything goes well. We have wanted to be more consistent with his updates, but it was so difficult to do anything while we were at the hospital because of the many different specialists that stop by to update us on the status of his condition and care. He has had attending physicians, nurse practitioners, cardiologists, speech therapists, physical therapists, techs, nurses, surgeon, anesthesiologist, in-home care nursing representatives, social workers and case workers, all of which we are so grateful for their amazing quality of care. Then we would come home in the evenings to our other two boys and it was time for dinner and then bed.

Levi struggled with feeding when he arrived at the step-down ICU, but that was expected. He had to slowly build up from continuously receiving small amounts of milk through the feeding tube to receiving feeds every 2 hours after a few days. Then finally by Saturday evening, he went to feeding every 3 hours. He can feed as much as he is able through a bottle with my milk or by nursing and then the rest goes through the feeding tube. Hopefully we can ween him off the feeding tube in a couple of weeks, depending on how he does. He is also on a medication to continue to drain the fluids in his chest from after surgery, aspirin to avoid blood clots from forming in his coronary arteries, and then Tylenol (as needed) for pain. After 6 weeks, he should be off all medications.

Before we left the hospital, we had to be trained on CPR (required for all ICU babies), oxygen, feeding tube, and his medications. Luckily, he didn't have to go home on oxygen, he weened himself off of it right before he was discharged. However, Sam and I both dreaded the feeding tube training. He already pulled one out before his surgery and the nurse had us watch her put one back in so we could see how it was done. She couldn't get it through after several times of trying. Levi was screaming the whole time. She almost went to get another nurse when she finally pushed it through. So to train us on how to place it, we had to pull out his old one and place a new one. I was not too excited about it, especially since I remember my cousin recounting her experience with her little boy's feeding tube who was born with Trisomy 18. He screamed every time she had to replace his feeding tube and she said she felt like she was losing moments of his life every time he pulled it out. His condition only allowed him to live a couple of months. Our situation does not compare to theirs, but her experience remains imprinted in my mind and I cringe when I am causing discomfort or pain to someone else, especially my own child. 

In spite of the hardships of hospital life, having Sam take work off without pay, and trying to juggle between being with the baby and our other two boys, we feel it has hardly been a challenge because of the immense support from friends and family. We could not have done it without them. Sam's sister and our friends, the Bangerters and the Browns, have all helped us watch our boys. We have also had many offers from dear friends in the area to also watch our boys. We have had many friends and family come and visit that have helped lift our spirits. My brother even came to visit with his wife and new little boy from Wyoming. Many friends and family brought us meals too and while we were in the hospital. There is also a Ronald McDonald extension in the hospital that has a fridge, freezer, and cupboard stocked full of food. Because of the tremendous blessing of friends, family, and thoughtful organizations, our burden has been lifted. We hope to be able to give back throughout our life as others have given so much to us. For many have done as the scripture says, "...as ye are ^adesirous to come into the ^bfold of God, and to be called his people, and are willing to bear one another’s burdens, that they may be light; Yea, and are ^awilling to mourn with those that ^bmourn; yea, and comfort those that stand in need of comfort, and to stand as^cwitnesses of God at all times and in all things, and in all places that ye may be in, even until death, that ye may be redeemed of God..."

I want to share another tender mercy from the Lord that happened to us this last Friday. The Lord has shown us in so many ways how many of our lives are connected and how we can lift and strengthen one another. After eating at the Ronald McDonald extension, we were cleaning up our area, and an elderly women sat down to eat at our table where we had been eating. I had left a few unopened baby bottles on the table and as I was putting them in my purse, the lady looked at me, hinting toward the bottles, and inquired, "You must have a little one here." I told her I did and that he was doing quite well, thinking maybe she wanted to talk and so I did not want to dwell too much on my situation. So I then asked her why she was there. She told us that her autistic grandson was having his tonsils removed, but she did not seem to concerned about it. She seemed more curious of my situation and quickly turned her attention to asking why my baby was there at the hospital. I told her it was because he had a 3-part heart defect and basically what that entailed. She then broke down and began to sob. I didn't know what to do other than put my arm around her to console her. She told us that her daughter had the very same thing 46 years ago and passed away. They tried to get her to six months of age before performing surgery, but her heart was wearing out, so they performed surgery at 2 months and she passed away. There was not enough knowledge or technology for such a surgery to properly treat her. She said she was so grateful to hear that our baby was doing well because she had allowed the doctor's to perform an autopsy of her baby's heart so that they could hopefully one day better help other babies with such a condition. She also told us that her little girl was born on March 12th and it was difficult for her to be in the hospital during the birthday of her little girl. She expressed her gratitude once again for meeting us and told us that the Lord did bless her again six years later, on the same day, with another little girl. We also expressed our gratitude to her for blessing our lives so that we are able to have Levi. 

We also found out this last week that our close friends' little baby boy was just diagnosed in utero with one of the most difficult heart defects to treat called a hypoplastic left heart and a very complex case of it. There little boy will have at least 3 very complicated surgeries if he can endure them and then he will require a heart transplant at about age 5. They are naming their little boy Jacob Levi, after our little boy. We are so touched that little Jacob will carry Levi's name. We plan to be there for them just as other's have served us. They are asking for prayers that the baby will be able to be born full term, no other complications will arise, and that he will be strong enough to endure the first of many surgeries. 

We truly are all children of God and that makes us all brothers and sisters who need one another to grow and learn. We are so grateful for moments like this in our lives that confirm our testimony of a loving Heavenly Father who knows us and shows us how our lives our connected with one another. We love you all and thank you for your love and support! Thank you also to all of the kind comments that have been posted on our blog and facebook pages. They have also helped lift our spirits and have brought us much comfort. 

The Scar that Represents Life

Sunday, March 9th: Closed up the Chest.
Still swollen from fluid retention.

After surgery, Levi had retained more fluids than expected because he was on bypass for so long. But over the next couple of days and with the constant monitoring and adjusting of medications, he was able to drain enough fluids to maintain stability. They have continued to use the terms "champ," "rock star," "model recovery," "fighter," and "feisty" in reference to his recovery. The hardest part for us was watching him wake up because he would wake up with a "vengeance," as one nurse described. He would grab at his ventilator tube and try and yank it out with his "boxing glove" hand, where the IV was attached. All four fingers were taped together, but he would use his thumb and his taped fingers like a claw and pull on it. So every time he woke up, they would have to sedate him again because they couldn't keep him from pulling at cords, even with a sock on the other hand.

X-ray with 3 drainage tubes, arterial
and central lines in heart, catheter
to drain urine, and pacemaker lines.

The surgeon closed up Levi's chest on Sunday morning because he had lost enough fluid for closure. Before closing up his chest, the sternum was closed by using 5 stainless steel wires that wrap around it. Over time, the bone grows around these rings much like a tree grows around wire that is used to hold it in place. Over the next several days, he continued to grow stronger. They began feeding him 1 mL of milk per hour (he was receiving 68 mL before surgery every 3 hours) through his feeding tube and increase it gradually, as his stomach could handle it. Now it is Wednesday and he is currently receiving 22 mL per hour. They have also weened him off almost all of his medications. He is still receiving a few pain medications to keep him comfortable, but he is doing well.

Yesterday, the surgeon came to check on Levi and the nurse told him how well he was doing and he said with concern, "Let's not get too cocky yet." But Levi continues to show his strength and the doctors and nurses were so pleased with his progress by this afternoon that they decided to move him to the step-down ICU. Today was the first time we were also able to hold him since his surgery. He is now being seen by a speech therapist that is monitoring his vocal cords and throat for when he is ready to nurse. After being on a ventilator, the throat is irritated and so they need time for the swelling to subside. He does not like to be prodded (who does?), so when the nurses come in to work with him, we are pretty sure he is pretending to be asleep because as soon as they leave, he opens his eyes and acts like he is wide awake. They have all been amazed at how well he has been recovering. We are also in awe at his progression as he just had major open heart surgery on Friday. We attribute that to the many prayers that have been given on his behalf. Thank you everyone!

The 5 stainless steel rings holding his sternum together.

We wanted to post pictures of his before and after surgery, but not in a negative way. Before his surgery, we thought about how perfect his chest was and how he would have a scar after the surgery. Then the thought came to me that this scar would represent life, much like the Savior, who has a perfect body, also has scars on His hands and feet that represent and remind us of the life he has given to each of us. I love the scripture that reads: Zion hath said: The Lord hath forsaken me, and my Lord hath forgotten me- but he will show that he hath not. For can a women forget her sucking child, that she should not have compassion on the son of her womb?... Behold, I have graven thee upon the palms of my hands; thy walls are continually before me."

On the Road to Recovery!

I posted this on facebook, but I am sorry for not posting it on the blog for those who are only checking the blog. Levi came off bypass in time and his heart started back up. The surgeon said everything looks good right now and he is off to a good start. The surgical team could not believe how well he did. They said it is almost always typical for patients with heart surgery to have arrhythmias after stopping the heart, but his heart beat was perfect when they restarted his heart! They said that was pretty amazing.  Now they are saying he is the model for recovery. He was watched over and thanks to the many thoughts and prayers. We feel so blessed. Now onto the road to recovery. His chest will be left open for the next few days to allow for swelling and any other possible complications. He will be closely monitored during his recovery in the Cardiac ICU. Thanks again everyone! We are so relieved and thankful!

Waiting through His Sugery

Our little Levi peacefully sleeping right before surgery

I didn't know if I could write today because I have a lot of anxiety, but I am not sitting very well either, so I finally decided writing will help my mind to focus elsewhere and keep me calmer... hopefully. We met with two of the main doctors that are working with Levi today: Dr. Philip Burch (cardiothoracic sugeon) and Dr. Greenburg (anesthesiologist). We also met with a cardiologist, but there are 20 at this hospital and whichever is on call is who is in the operating room with Levi. 

Last cuddles with dad
before surgery

Last cuddles with mom
before surgery

The cardiologist enters a catheter through down the throat that allows them to view the heart in 3-D before they start the surgery and at the end, to assure that everything looks good and is as expected for the before and after pictures of the heart. Then the anesthesiologist explained he would enter a line through his neck, through his arm, two IV's, and the ventilator tube down his throat. The surgery started at 8:30 am this morning and they spent the first couple of hours entering in these lines.

Dr. Burch, the cardiothoracic surgeon, spent over an hour explaining his exact procedure and then answered our questions. We had not met this surgeon yet, but he is the head surgeon of the two cardiothoracic surgeons that they have here. He explained there were some unknowns still with the coronary arteries. These arteries wrap around the heart and pump blood to the heart muscle itself and they are the hairlike arteries that are 1mm-2mm thick. Basically, he explained that his anatomy was a little more complicated than the other arterial switch operations he had, but he explained all of the possible scenarios he would do to fix it. He also explained that the large hole (VSD) between his lower chamber was also very large and would be difficult to access to sew it up. Although the hole had been good for him before his surgery, its size complicates the surgery further. He explained 4 different access points to close it up if he can't reach it through one access, he'll cut through another and then another. The worst case scenario is through the ventricular muscle itself and it is not ideal because cutting through the muscles adds complications further on in life. Overall, he explained that they have to weigh out what is most important and to what standard because they have a certain desired time frame when the child is on bypass (about 2 1/2- 3 1/2 hours for a baby), which is when the heart is stopped to perform the reconstruction. We were amazed at the knowledge of this surgeon and we felt a great peace and comfort knowing that our child is in his hands. However, our peace came ultimately came from the Lord, knowing that He would guide the hands of this surgeon.

At 10:30 am, the made the initial incision. By 11:30 am, they put Levi on bypass to begin the reconstruction. They are planning to use all of the time they have and Levi is still currently on bypass and it is 2:00 pm. We feel the strength from all of your thoughts and prayers. Thank you. 

Rick and Sheryl Bangerter

Jared, Rachael, and Liberty 
Bangerter

We are waiting with Rick and Sheryl Bangerter, my husband's mission president and his wife. We have been staying with them when we are not sleeping at the hospital. This family is the other part of our story that we have yet to share. Their son, Jared Bangerter, at 29 years old, passed away February 1st of this year and he had one of the same heart defects (TGA) as our little Levi. He left behind his sweetheart, Rachael, and their 6 month old little girl, Liberty. We had planned on staying with the Bangerters since we heard of little Levi's condition in November. He passed two weeks before we were to be in Utah. We told them we would stay somewhere else and that we had no idea. Sheryl said, "Don't you dare!!!!!" It has been a neat experience for all of us. We have had so many tender mercies from the Lord through it all. It is amazing how the Lord orchestrates our lives. To add to the tender mercies, Levi was born on Sheryl Bangerter's Birthday, March 2nd. The Lord gives life everyday, but He also calls many home everyday. But that is part of our mortal experience, to receive a body and to be tested and proved here on earth. Hopefully we can prove ourselves worthy to return to live with our Father in Heaven and His son, Jesus Christ. The Lord has shown us so many times that he is mindful of us through both Jared's and Levi's lives.

Waiting for a Mended Heart

Daddy feeding Levi the bottle

Levi has been doing great on his own. Although his vitals are lower than a healthy baby, they are great for a baby with a heart condition. The doctors decided to transfer him to a step-down Intensive Care Unit (ICU) yesterday as opposed to the Cardiac Intensive Care Unit (CICU) because he doesn't need such intense monitoring right now that is required in the CICU. The step-down ICU is a private room for the baby with a private bathroom and a couch that turns into two separate sleeping pads. It is so much nicer because I was discharged from the hospital yesterday and now Sam and I can both sleep in Levi's room, unlike the CICU. The CICU is a more sanitized environment and is not set up that way.

Levi with his feeding tube

Nursing has been a bit challenging. The first couple of days, I was not able to nurse the baby because the doctors were just giving him glucose water constantly to bring normality to his glucose levels. There was also uncertainty about whether there was enough oxygen to his digestive system to be able to properly process any milk he was fed. But after a couple of days, they allowed me to nurse. He only nursed once that day and had been too weak because of his lower oxygen levels which makes an already sleepy newborn more sleepy! Now he is on a regular feeding schedule every three hours. Because he is weaker, he typically nurses for a couple of minutes and then has about half through a bottle and then the other half through his feeding tube. I am so thankful he is now getting the nutrients from my milk.

Bathing Levi

Today and tomorrow, they are prepping little Levi for his surgery on Friday, March 7th. The doctors had their conference today and discussed the plan for his surgery. We will hear about it first thing tomorrow. The nurses bathe him with special cloths that have a solution that reduces the bacteria and germs on his body to reduce the risk of infections during and after surgery. We have been thinking a lot about his little body and how relatively healthy he looks and acts that will compare to the next week or so of him being heavily sedated and how we won't be able to cuddle and hold him like we can now. It helps remind us to take in every moment with him now.

It has also been difficult being away from our other two boys. They are currently with my sister-in-law and their cousins this week and I know they are in good hands. She is an amazing mother and we have been so grateful for her sacrificing her time to drive down from Idaho just to watch our little boys, in addition to her three kids! Her youngest is a boy and 2 years old, and our two boys are 1 1/2 and 2 1/2 years old, so she has three little toddler boys that are all 6 months apart, plus her older two kids!

Ephriam ready for bed
Bears given to the boys from
the Moreys

Johnny ready for bed

Since we have been in the hospital, we had only one short visit with our two boys on Sunday, after I had the baby. Then we finally saw them yesterday in the late afternoon. I missed them terribly. I am not use to being away from them. We went to a park and spent the evening with them. I just wanted to cry because I missed them so much. I think the Lord has once again given us this experience to remember to cherish and love our kids that much more. My husband and my children bring me the true joy and happiness in my life. I would do anything to keep them as long as possible. We then read scriptures together and put both of the boys to bed before we headed back to the hospital. As I put my Johnny to bed, I said, "Goodnight! I love you! See you later!" He said, "No see you later, goodnight!" He wanted to make sure we were not leaving. Sam and I had said our goodnights and goodbyes separately and so he did not know what Johnny had said to me. Sam said something similar, except he said goodbye and Johnny responded with, "No goodbye, goodnight, I love you!" I am so thankful that the Lord has sent me to this earth to be able to bring some of His children into this world and to raise them up in truth and righteousness. The Lord blesses each of us in different ways and I am so thankful that He has blessed me to be able to have children and be married to a wonderful husband to help me raise those children. 

Johnny Playing at the Park
with daddy!

Thank you everyone for your thoughts, love, support, and prayers. We feel of your strength. Our hearts go out to the so many families who have endured tragedies and hospital life. We hear so much each day about other's situations whose are far worse than ours. One dad was with his 5 kids and are far from home, taking care of their sick child and they will be here at least another 8 weeks with an unknown outcome or another who is battling over the decision on whether to take their loved one off life support. It really breaks your heart, but then it also makes you realize why we have a Savior, to help mend our broken hearts. We know He can and he will be mending our hearts as well as literally helping to mend our little Levi's heart. We love you once again! May the Lord bless each of us in our lives!

WELCOME Levi Aaron Verhagen!

Levi holding his pacifier

Levi Aaron Verhagen

It was too chaotic of a day to get this out yesterday. But yesterday, March 2nd (his due date), I woke up with contractions at 5:00 in the morning. We arrived at the hospital at 6:30 am and I delivered the baby at 8:36 am! His birthday has great significance that I will explain in the next post.

Ready for Transport
to Primary Children's Hospital

He was 7 lbs 6 oz and 20.5 inches long. Although this following word is usually not used for describing labor and delivery, it was amazing! We had a great team of nurses and doctors who were kind and knowledgeable. One of the resident doctors was coming over to meet me when he heard I was ready to push. Our prayers and those praying for us were answered because I did not have to be induced, labor and delivery was quick and all natural, no stitches for tearing, and I was able to be well rested before I went into labor. It relieved so much of the stress! We know Heavenly Father answered our prayers according to our desires so that we could focus on the baby when he was born.

After he was born, he was passed through the window to the Neonatal Intensive Care Unit (NICU) where they held him for about 30 minutes until the Primary Children's transport team came to transfer him over to their Cardiac Intensive Care Unit (CICU). Sam went with the transport team while the nurses prepped me to be transferred to my room. 

Once at Primary Children's, the cardiologists said his hole (VSD) between his lower chambers is so large that he does not need to be on any medications or have any temporary procedures before his surgery. One of the resident cardiologists took about 150 images of his heart that took several hours. During this time, Sam came back to get me and wheeled me over to see the baby. By the looks of him, you wouldn't even know anything is wrong. He is beautiful and has good pink coloring. Another blessing that he does not need medication or any temporary procedures before his surgery.

Room Setup

The anticipated surgery is scheduled for Friday and they will discuss the plan for the surgery at the meeting with all the doctors on Wednesday. They also want to see his PDA (a duct that all babies are born with that closes within 7 days after birth) close so they can properly determine if there will be narrowing in the major arteries, which would change the technique of his surgery. Once it is closed, they will take more images of his heart with the ultrasound and have a proper plan for his surgery. The doctors and nurses are amazing here and constantly studying. When they are not working with the patient, they are sitting down at a desk, looking through books to study the patient's case. After the doctors had the images of Levi's heart, they sat at the desk in front of his room, studying the pictures of his heart and how to plan for his surgery. It is so comforting to be here with such knowledgeable doctors and nurses who inform us of everything that is happening, as well as involve us in the decision making process.

Thanks to all of those helping us watch the kids, Grandpa, Aunt Sherin, and the Bangerters and their whole family! Thanks also for all of our friends and family who have come to visit and for all the prayers and fasting! We love you!

Family Picture!

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/