Monday, March 31, 2014

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.
 Then cometh he to Simon Peter: and Peter saith unto him, Lord, dost thou wash my feet?
 Jesus answered and said unto him, What I do thou knowest not now; but thou shalt know hereafter. 
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.
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.

Monday, March 17, 2014

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, " 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 ascwitnesses 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. 

Wednesday, March 12, 2014

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."

Saturday, March 8, 2014

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!

Friday, March 7, 2014

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 
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.

Thursday, March 6, 2014

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!

Monday, March 3, 2014

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!