Little Hearts, Big Miracles: Broken Hearts

Monday, August 25, 2008

Broken Hearts

The Lord is near to the brokenhearted, and saves those who are crushed in spirit.
- Psalm 34:18

Johnathan David Nyberg

"Johnny"

April 20, 2008 - August 24, 2008

The above picture was taken on August 16, 3 days before his surgery. A special thanks to Johnny's aunt, Megan Conrad, for the picture. Each picture is so precious to us now. We are getting by hour to hour and sustained by all the thoughts and prayers, encouragement, notes, and support from so many. Very difficult times for our family, sometimes the sorrow seems almost overwhelming, but we will get through this. Juliana is doing okay, and processing things right there with us, which is what she needs to be doing. I will post arrangement information here when we have plans finalized.

Our Story

On December 7th, 2007, we went to the doctor for a routine 20-week ultrasound for our unborn child. It was anything but routine. Complications with our baby were identified. A week later he was diagnosed with non-immune fetal hydrops. By December 21st, they were telling us he would not make it. The lack of hope from the doctors was difficult to understand. It wasn't "some babies make it, some don't" - the response was uniform - babies in his condition just don't survive. I don't fault them for this as it seems it was the reality of the situation.

Through those difficult days, many, many people prayed for our baby and our family. People we will never meet, from seeing us on a prayer list somewhere or through hearing our story from others. We prayed, cried, and tried to remain hopeful for a miracle. Lea and I experienced the difficult time so differently....but supported each other as best we could, while continuing to love and care for our daughter.

Between Christmas and New Years, I made some calls about funeral arrangements and considered if we would want an autopsy. We contacted a counsellor that specializes in helping familes cope with what we were facing. And at the same time, we tried to remain positive and hold out some hope for a miracle for our son.

On January 4th, we had a doctor appointment to see how things were progressing. We knew our little boy was still alive, he was moving regularly, and Lea actually had a sense the day before that something had changed. So many were praying, we wondered what we would see. A few seconds after seeing the images on the ultrasound monitor, I knew things had reversed....his condition was improving! The doctor came in and confirmed it, the miracle so many had been praying for was happening. We were overwhelmed with emotion and thanks to God, and the doctors generally told us that if things continued to improve, although they could not explain it, our baby would most likely go full term and live.

With our baby's condition improving, a cardiologist was then called in a few weeks later to review his heart condition and found evidence of a congenital heart defect diagnosed as Tricuspid Atresia. After all we had been through, thinking we were going to lose him, we were stunned with the news. The emotional ups and downs of the journey we were on with this little one continued.....Johnathan David was born April 20, 2008, and he died in our arms August 24, 2008.

Johnathan's Birth

From post "Where do I begin...." - April 20, 2008, 4:49 am

All is calm now. What a night. You never forget the event of the birth of a child but this takes things to a new level. I knew when Lea woke up at midnight with a strong contraction that it was showtime. The contractions came quickly, I was timing them less than 5 minutes, duration of a minute to 2 minutes. And rapidly increasing in intensity. After about 15 minutes it was apparent we needed to get to the hospital as quickly as possible. I had called Marion, our doula and she was going to come over to the house but I woke up Mom and Dad and had Mom call her to tell her to meet us at the hospital, then had Mom and Dad help me load the truck with our stuff. Mom gave me a hard time that the truck was not loaded. "Did you think loading the truck was bad luck? Why isn't the truck loaded and ready?", she said. Her last words as she went back upstairs and as I went in to get Lea were, "Get there as soon as possible!"

There was little time to do much of anything except get a robe on Lea and get loaded to go. We had just enough time between contractions to get her from the bedroom to the truck. On the way there, I knew things would happen quickly - she was laboring hard and it was pretty intense. As soon as we got in the hospital entrance, Lea had another contraction, and the nurse at the front desk got pretty excited and started calling others. There was no time to admit her, it was basically "Name! - How Many Weeks! - Let's Go!"

And go we did, down the hall about 30 feet, then another contraction, Lea said "He's coming" and then the doula and I digging through her robe and clothes and low and behold, there's Johnathan's head! A couple of minutes later, another contraction and out he came, Marion caught him, I had a hand on his back, and one hand on Lea. Johnathan is born! He looked absolutely beautiful to me. At this point, there are people running back and forth everywhere, somebody appears to clamp and cut the chord, and I'm shouting to everybody that he has a heart condition and needs to get to the NICU as soon as possible. There was really no time to go over this or for anyone to pull up records, charts, etc. to review our history. Immediately a nurse wrapped him in a blanket, and we literally run down the hall with another nurse to the NICU, looking for a spare room, any spare room. As we are leaving, I'm looking back at Lea and there are others gathered around her and I'm shouting to her, "I'll stay with him." We had talked about this earlier. How different this would be to have the separation with Lea - I couldn't have imagined that the separation would be so abrupt.

I stayed with Johnathan for about 30 minutes to make sure he was stabilized, and then the next couple of hours, I was back and forth between Lea and Johnathan, checking on everybody as best you can do. Not the ideal situation, it was really tough to be apart from Lea knowing she had just been through so much. I wish we were together, but Johnathan is where he needs to be in case there is an immediate problem. The first 1-2 hours for Lea were a little tough after the birth, but she's doing very well now and getting some rest. She is really remarkable, and I am so proud of her. And then there is Johnathan, he is resting comfortably and quietly in his isolet. Born at 1:05 am, 20-inches long, 8 pounds, 3 ounces. His vitals are good, heart rate around 130 bpm, oxygen levels have steadily been climbing since his birth and are now at 88% which is outstanding given his heart condition. He looks great - a nice rosy pink. The cardiologist arrives at 6 am for a round of tests and evaluations to determine the next course of action. Best case scenario is that he doesn't need to take prostaglandin right away and he gets the green light to try and nurse.

I look at him and he's just beautiful. New babies are a wonderful thing. Juliana is a miracle herself, so is Johnathan. We are all miracles in our own way when it gets right down to it. The miracle of birth and life is incredible. What a night. I'm just wired. It's his birthday today, and I need to just surrender right now all thoughts that I will ever understand much of anything about the mysteries of this child, his story and how it continues to unfold. Thanks be to God for protection, timing, and safety in this birth!

Little Hearts, Big Miracles

Monday, August 25, 2008

Broken Hearts

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