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.