| Surgery Journal-July 1991 |
| This journal is an attempt to recapture the memories of Josiah's first surgery, and his release from the hospital after 21 days in the NICU.. Its been almost 11 years since Josiah's first surgery, so the detail will be sketchy. . Josiah had been in the NICU for the first 13 days of his life. After being diagnosed with heart disease at 3 days old and waiting another 10 days while trying to stabalize his condition, I arrived at the NICU at 6:00 am on a Saturday July 10, 1991 to some rather frightening news.. Upon arrival, I was told that Josiah was very fussy because he had not eaten. I was also told that it was decided that Josiah was in need of emergency surgery. I was not suprised, though. The NICU nurse that cared for him most of the time had trained me well in recognizing the symptom's of congestive heart failure and respiratory distress. I am forever thankful to God for sending her my way. She knew what I was going through because she had very recently lost her daughter to Hypoplasic Left Heart Syndrome. At that time, the only viable treament for her baby was transplant. Her daughter lasted 40 days until she finally could not fight any longer. Paula, the nurse and mommy of a Cardiac Kid, was very passionate about saving Josiah. She also put me on a road of information and understanding. She gave me the confidence to take care of my medically fragile child, and equipped me to make informed descions for him. As I waited with Josiah, trying to comfort him, the surgeon came to talk to me. He told me what the problem was, and what he planned to do to fix it. He also informed me that this was not a total correction, but just a palative procedure. As I have done so many times since then, I begain asking questions about his future: What will be done? How will you fix this? How many surgeries will he have to have? Why can't you do it now, why do we have to wait? " He was patient, and explained that to fix him now would be very dangerous, and he would not likely survive. We were told it was possible he would not survive until he was old enough to be repaired. They explained that the earliest they could begin repair was at 6 months. So, finally, the time came to take him to surgery. I waited with Josiah's father, and with some friends from church. At one point we went for a walk outside. When we did, we remembered that there was supposed to be a full solar eclips that day. We stood outside looking at this eclips through X-ray film (to protect our eyes) as it got quite dark (for a southern Californian summer day). I remember thinking, "This is some kind of sign for us." I thought it was too much of a coincidence that Josiah's emergency surgery would be suddnely scheduled on this day, a Saturday. I felt that God was saying, "This darkness is only temporary. It will pass." Approximately four hours later Josiah was wheeled into the adult ICU (there were not PICU's at this hospital). He was soon extubated (before I got there). He was doing very well. The anesthesiologist gave Josiah a dose of Morphine, which very quickly put him into resp. arrest. They bagged him several times as I watched from the doorway, and then soon decided that he had to be reintubated. After that he recovered well. While in the ICU with him, I decided to read verses from the Bible to Josiah. As I did, I sensed that I should read Psalm 91 to him. I knew the psalm, and thought, "Yeah, that's just me. Everyone reads Psalm 91 when they are in trouble. God is not telling me to read it." But as I left to get a bite to eat, the thought nagged me. I could not forget it, and so I said, "Okay God, I"ll read it when I get back." When I got back to the room and began to read the words to this psalm, I remember thinking (while I was reading), "Yeah, yeah..they that walk in the shadow of the Almighty wil rest in the shadow of his wings. I will say of the Lord...." I was just going through the motions when I came to verses 14-16. The tears started to flow down my cheeks as I found the first comfort and assurance since Josiah was born.. All of the doctors and nurses assured us that they would do their best, but there was a chance that the worst could happen. Now, the Lord had stepped in, and he gave me one of the first of many promises for Josiah. It was directly connected with the prophetic word I had gotten for Josiah before he was born. This prophecy spoke of Josiah's future as a mighty MAN of God, that he would do mighty things, and that he would even know the Lord as John the Baptist had, while still in my womb. (You can read about it on the previouse page). Below is the promise from Psalm 91: 14-16. " Because he loves me, " says the Lord, "I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With LONG LIFE will I satisfy him, and show him my salvation." After reading this, I knew beyond doubt that God was once again speaking to me about Josiah's future. I realised that in order for him to become a Mighty Man of God, he would have to grow up...to be a man. These promises have given me something to hold onto in the worst of times with Josiah and his fight for survival. A few days later Josiah was back in the NICU, and well on his way to coming home. On day 19 we were told that we would be taking Josiah home in a few days. They wanted me to stay the night in their nesting room (a room designed to help parents of kids that had been in the NICU for a long time, to bond with their baby, and get used to the idea of total care at home). On day 20 my two other kids, their father, and I went to the San Diego Zoo. That night I arrived at the NICU and got Josiah ready to sleep in the nesting room. It was so peaceful and comfortable. We rested well, and the next day...day 21...we WENT HOME. Oh, I thought we'd never make it. When we first arrived in the NICU, there was a mom there that said, "We've been here for 21 days." I remember thinking, "Oh, I can't leave my baby here for 21 days!" But, thankfully, with God's help, we did it! Our baby came home! It was such a good day. Other things that I remember from that time was another baby that was born the same day. They were also told that their baby had pneumonia and would be home within five days. Day five came, Josiah was diagnosed with CHD, and this baby was going home. I was truely glad for them, but sad for us. Just as they were leaving, the baby's well-meaing grandma brought him over, all wrapped up and put him up to my face and said to the baby, "Say goodbye..." I broke down and slumped over in tears, happy for them, but jealous for my baby. I wanted to take him home too, but at that time I could not even hold Josiah.. I was afraid that day might not come. She felt so bad, and I ended up comforting her. Again, I'm so thankful to the NICU staff, especially Paula, and the Neonatologist (who used to call me the milk cow as I brought in the night's supply of expressed milk)) and the Pediatric Cardiologist who gave us every hope that Josiah would survive. Many with Josiah's disease were told there was no option, or that the odds were not very good. I was always told, "He will live, he will surive and have an ordianry life." I've always believed that, and so does he. I will update further as I get more time and energy. I plan to make a journal for each surgery, and maybe for what I can remember of his 36+ hospitalizations (hehe, not every day, hehe). Thank you for taking the time to read. You can email me with any questions at: |
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